Frequently Asked Questions about alopecia (part 6)

ARE THERE ADDITIONAL PROBLEMS TO CONSIDER?

ABSENT NOSE HAIRS

“The running nose that you don't notice because there's no nose hair to tip you off... It's certainly been a nuisance for me, living in a cooler climate.”

“I haven't had a hair on my body (except for the ones I pay a fortune for!) in 4 years.....now I start getting some regrowth---guess where? In my NOSE!!! NOSE HAIRS, for cryinoutloud!! Where's the justice?”

Nose hairs offer some protection by clearing large particles from the air. Some pollen and dust particles are removed by this mechanism but only by passive impaction. The large majority of these particles, because of their small size, are cleared through other mechanisms. Theoretically the absence of nostril hairs may allow an excess of allergens to fall in contact with the mucosa, however, the body has multiple other defense mechanisms to take care of the burden. If your mucous glands are normal and there is an adequate production of secretions you should do OK despite the absence of nostril hairs. The only major observation I have drawn from some of my patients related to the absence of nose hairs is the development of a keen sense of smell. They can smell perfumes of ladies from far away. Some people tell me that they are so sensitive that most strong smells cause them to sneeze. That is the reason they can't wear any makeup.

Note: Cilia are appendages of cells that have a number of functions including clearing mucus and particles deposited within the respiratory tract. Their origin and structure are quite different from hair and are not affected in patients with alopecia areata.

AUTOIMMUNE DISORDERS

“I believe that AA is auto-immune, and that auto-immunity grows and spreads, given enough time. Therefore, children (and even adults) contracting AA should be occasionally screened for the most common conditions associated with long-term AA. Few doctors know much about the co-incidency of these diseases, and earlier treatment can prevent later problems. For example, an experienced dermatologist suggested I be tested for thyroid problems. Ultimately I was found extremely low in T4 and 20 times normal in TSH and in desperate need of thyroid treatment. If undiscovered, I could have been seriously harmed.”

“The FAQs should mention these diseases. Thyroid problems are common, as are various hardy skin difficulties (psoriasis, dry skin, fungal infections, etc.). If you look at all atopic diseases, which are mentioned as correlated with AA and auto-immune diseases, there would be various allergies, asthma, lupus, and more serious conditions. My own auto-immune progress was AA to vitiligo, to thyroid disease, but the same dermatologist told me he's NEVER SEEN the condition progress to involve more than these. Still, I'm interested in what may happen to me... I've had plenty of experience with the ignorance of dermatologists so far!”

“Research indicates that some folks with AA/AU will get other autoimmune diseases. Statistics declare a higher than average co-incidence. In my case, follow the timeline: AU age 8; Vitiligo age 14; Allergies Age 20; Thyroid age 25.”

Autoimmune disorders occur when the immune system recognizes parts of our own body as foreign (a potential invader). Some of these conditions tend to be highly localized, affecting a specific organ (e.g. thyroid). In other instances, diseases like systemic lupus erythematosus cause reactivity against many tissues in the body. Organ-specific autoimmune conditions are usually directed against thyroid, adrenals, stomach and pancreas. Generalized disorders are seen in those cases where the primary target involves the skin, kidneys, joints and muscles. It is therefore not surprising that there is a concurrence of various autoimmune disorders in alopecia areata where the primary focus of reaction is the skin. Among the autoimmune disorders "associated" to alopecia areata are Hashimoto's thyroiditis, thymoma, hypogammaglobulinemia, autoimmune gastritis, pernicious anemia, Addison's disease, testicular atrophy, vitiligo, lupus erythematosus, rheumathoid arthritis, polymyalgia rheumatica, mysathenia gravis, ulcerative colitis, lichen planus, lichen sclerosus et atrophicus, lichen rubra, pemphigus foliaceous, and the candida-polyendocrinopathy syndrome.

BARBIE COMPLEX

Barbie is an abysmal role model for a young girl and some people don't allow them in the house. Taking a Barbie away from a child who has received the same as a gift may nevertheless result in a major league crying episode. A child may "love" Barbie because she's so beautiful. Her long blond hair must make her a wonderful person. The fact that a child's hair is dark and short (although quite lovely too) means that she isn't, and can never be, as wonderful a person as this plastic role model. Ouch! Here we have a [truly] lovely, intelligent, hard-working young girl who will always believe that she is somehow not as good as a plastic bimbo [sigh].

Everyone is familiar with the media/advertising focus on surface aesthetics, but what can we do to combat the lousy models that society appears to be foisting on our impressionable children? You can't escape the image anyway; check out Disney movies - Cinderella, Sleeping Beauty, etc. It is interesting how Disney jumped on the Barbie band wagon and has resorted to sexy, large breasted, small waisted, long haired females. Just look at the difference between Snow White (somewhat proportionately real) and, say, Esmarelda from the Hunchback movie or Jasmen from Aladin. If you look at these films it becomes REALLY clear that they were all so wonderful primarily because they were so terribly, terribly beautiful. Maybe the reason why there are so many eating disorders on college campuses has to do with the Barbie play.

Just think of all those magazines written at an 8th grade level. Ever wonder why? They appeal to the part of us that is vain. They offer us the fantasy of being something that we can never be. Most females would like to be 5'6", weigh 120 lbs and have perfect measurements (in this lifetime). But that is what magazines offer us, a dream. Those of us who work on mental health are aware of the damage these images cause. Television does not help either. It is an upwards battle for kids with this condition since society gives them images of perfection that no one can live up to.

My girls were Barbie fiends and collected all the rigamorole...houses, cars, clothes and accessories, not to mention the backpacks, lunchpails, t-shirts, nighties, running shoes, etc. About a year ago, Barbie suddenly became as unpopular as Barney the dinasour, which meant it was now cool for kids their age to go Barbie......uuuugh!! A few months ago we must have rounded up no less than forty naked Barbies, with enough doll clothing and footware to make Imelda Marcos and Princess Di jealous, and gave them all away. The dolls were all naked because my girls never could figure out how to get past undressing the damn things and I guess those mammoth mammaries made dressing the dolls too difficult. Maybe that's why Pamela Anderson is so often photographed nearly nude herself.

So why did we allow our daughters to get embroiled in such a materialistic, commercial pasttime?......for the same reason we actively celebrated Christmas and Santa Claus, it made our kids happy, so it makes us happy. You need to make a bad thing better. The trick, I feel, is to emphasize the positive aspects of the dolls. Talk about how unrealistic her figure is, and the fact that few people can have as fabulous a wardrobe as Barbie. We also read Barbie comics, which are pretty innocuous, but they do show Barbie doing much more than just being pretty. Sometimes she's a teacher, sometimes she's an anthropologist (for real!) other times, she's a photographer or even a pilot. The dolls feature her in many, many careers and although no one can have THAT many different careers, it does lead to discussions about what all girls CAN do. In the stories, the situations often deal with values and making decisions. They deal with honesty and integrity, with valuing other people's feelings and deciding what the right thing to do is. We read the comics together (they are out of print, now, unfortunately) and discuss the ideas behind the stories. She will act out stories with her dolls, but the "male" counterparts are used as little more than stand ins for her fantasies. Occasionally, she'll have a "wedding" with a dozen Barbies in wedding dresses and her one Ken and Aladdin there as grooms. The fun is in dressing them up and trading out their outfits. Occasionally, Ken has been known to wear a wedding dress. Didn't fit him well, though! :) Remember also that a girl/women's sense of self esteem and self is directly affected by her father and his opinion. Specially for fathers, spend quality time with your daughter. Have posters or conversations about famous women atheletes, artists, and the like, in order to provide a group of positive real role models for them to be familiar with... and I talk about it with them. I think it is completly understandable that kids that age would fall into the idealized barbie whopla, it's part of playing and pretending, imaginative fun. Just use it to your advantage.

CHANGES IN SKIN PIGMENTATION

Alopecia areata is associated with other disorders capable of changing the skin pigmentation. Among these disorders are included vitiligo (lack of pigmentation), Addison's disease (skin hyper pigmentation, although sometimes accompanied by patches of vitiligo) and Down's syndrome (almost similar to a black and blue mark). If therapy requires corticosteroid injections, their superfical deposition may cause skin depigmentation.

A bluish skin pigmentation in relation to those areas of hair loss may be due to a rare condition called "melanin incontinence." Occassionally, when under immunological attack, melanocytes do not shut down their production of pigment. Since there is no longer a hair fiber to incorporate the pigment, the pigment gets dumped at the base of the follicle. Melanin is difficult to break down or digest, so it builds up in large concentrations that give a bluish discoloration. Eventually the melanocytes do become inactive and the bluish spots disappear.

Patients using aromatherapy may take some preventive steps when using bergamot oil. This oil can can cause brown skin stains (berloque) when exposed to sunlight and is considered a prime photosensitizer (sensitivity to light). In addition, some perfumes may produce increased pigmentation (brown spots) in the area where the perfume has been applied, especially when it is immediately exposed to sunlight. There is no effective treatment, and the pigmentation generally persists for some time.

CHILD NEGLECT?

Don't assume that your ways of coping are shared by everyone around you. Consider who else needs information regarding you child's condition. It may be the teacher at school, the nurse or the bus driver. In some occassions it may be the child care personne at the child care center. One of our members was almost charged with neglect because she would not force their daughter to wear a wig. The mother really had to think hard about where they were coming from. The child care personnel felt that by not letting her child look like all other children, she was neglecting her needs. In their eyes it was most important to the child's development not to be different. Always educate from the beginning, meet with key personnel, and explain your decisions.

DEPRESSION

“Actually in a way, it seems to me that I may have been slightly depressed constantly ever since I first got the alopecia (12 years ago at the age of eleven).”

“… Any type of distress should not have to manifest clinically before we take it seriously....After all, I think it's the quality of life that we are concerned with, no?”

“ANY type of drastic change is bound to bring out certain emotions. I really belive that acknowledging those emotions, feelings, etc. is pretty darn healthy.”

“One therapist tried to help me by convincing me to be the best bald lady I could be, go bald, and not be ashamed. I could not do that.”

Some common links between depression and alopecia:

alopecia - "Oh, don't worry about it, many women lose their hair as they get older..."

depression - "Oh, it's probably just PMS..."

alopecia - "I don't know why you're so worried about it, it's just hair. Other people have real problems!"

depression - "Why are you feeling sorry for yourself, you have a nice home, some people have real reasons to be depressed..."

alopecia - "Maybe it will grow back..."

depression - "Oh, you'll feel better soon..."

alopecia - "Just wear a wig and no one will know..."

depression - "Just wear a big smile and no one will know... put on a happy face..."

alopecia - "If you hide it well enough everything will be OK..."

depression - "If you hide it well enough everything will be OK..."

alopecia - "Did you do something? Maybe it was caused by bleaching your hair..."

depression - "What did you do to bring this on yourself? Sometimes it's caused by guilt, you know..."

alopecia - "Oh, stop being so sensitive about it. Just cover it up and be done with it..."

depression - "Oh, stop being such a whiner. You could be happy if you wanted to..."

Is it normal to get depressed during the course of alopecia areata? Of course! Is your hair a part of you? Have you been losing it at an abnormal rate? Is your appearance different than it was? Are you trying hard to comb what's left so that others may not notice you're losing it? Are you wearing more hats to try to disguise it? Do you think that you are much more bothered by it than you should, and then feel even worse? If any of these has happened, then you have reasons to be depressed. Afterall, you have lost a part of your body. It would be abnormal if you were happy-go-lucky about losing your hair. Depression is normal with alopecia, especially in its begining. BUT, the important thing is that you can pull yourself out of it. Give yourslef an opportunity to grieve, to be sad, angry or upset.

One of the most important observations that I have noticed in depressed people is that they always live in the past. This stands in contrast to children, who generally enjoy life, live in the today and for the tomorrow. Learn to concentrate on the present. You have already learned many of life's lessons through the school of hard knocks. Now is time to apply whatever you have learned. Set goals, have something to look forward to. Write these on a piece of paper. Make your goals practical, things you can attain and are willing to work for. Visualize those goals. Have faith in the future.

Think of what is happening to you. Always consider all of the things you should be thankful for. Give God thanks for all of the difficulties you may encounter. It is not only of the good things that you should be grateful. Fortunately, I have noticed, that God will only provide for adversities to people that can overcome them. Take this as a challenge. As Nietzshe said, "What doesn't kill me makes me stronger."

I can attest that there is an important aspect of depression which makes it difficult to seek help for the same--- a sense of shame. When you are depressed, you often find yourself trying to hide it from others. Some people are particularly bright and engaging when they are drinking. They try very hard to speak without a slur and to hide the fact that they are slightly drunk. Because of hair loss, shame is already a feeling that many of us entertain. This feeling also adds to the depression. Funny thing, shame! Of course there is no reason why we should be ashamed of either our hair loss or depression, but the feeling lingers around, regardless.

One of our participants (within our list server) was tired of being stared at, feeling this way and not knowing if her condition would ever end. She probably felt like their nose fell off, that she was facially disfigured and had to wear a really good, natural-looking, expensive nose. In essence, she had valid doubts with answers that were not construed as uplifting. She failed to perceive that everything that happens to us, is for a reason. Life is school, and we need to learn the lesson, each person having a different lesson. Life will keep hitting us over the head until we recognize the lesson and learn it!! This is just what makes things work for many of us. The lessons that we learn from alopecia are actually pretty good. There are totally "perfect people" out there, that are perfectly miserable. Life is what we make it. If the staring is too much, is there something you can do to have it stopped or have their perception changed?? Either carry your head so proudly that others will look at you in awe??? Or to wear a look that blends in. You are who you are, no one can take that away, no other person can take that away.

Having alopecia is the single most difficult thing many people have had to come to terms with in their lives, and while they have come to accept this - they hate every minute of it. They hate having to worry about wearing a wig. They hate it when their head gets cold. They hate that whenever they are faced with a stress in their life - which is often - any hair that has started to regrow falls out. They hate this condition, it is not fair. You can read all of these paragraphs and agree to accept the condition and move on. There have been valuable lessons learned through having alopecia. Adversity is an excellent teacher for everybody. Everybody carries his/her own cross. Learn from the stories of others. Did you read about the person who ran the Boston marathon and arrived last, 4 days after he had begun (he had no legs and had to push himself with the pads of his hands). The man did not stop there, he set higher goals for himself. He went to run in another marathon (NY) and did better.

Please understand that when people say that they hate this condition, they are not saying that they hate themselves. In fact, they do not. It is just that when the truth is known and all the layers are peeled back, they resent that this has happened to them. Yet, through all the frustration, they have never felt, not even for a second, that they have had enough of it all. The very fact that they hate the alopecia means that they may get a kind of perverse pleasure from the idea or the hope that one day they might finally beat it. That one day they will look in the mirror and know for the first time know how it feels to have a full head of hair. I believe that no matter how bad things seem, you still have to believe that they can only get better.

What I am trying to say, is that it is all very well to say that there is no need to feel bad and frustrated and sorry for yourself - but sometimes you need to. Sometimes you need to vent just how awful this thing really is. In a way doing that keeps you grounded. It makes you appreciate everything else that is good in your life. Talk to yourself. Never let yourself down. Use a mirror if necessary. Aquire a postive outlook in life, and be convinced of it. If anybody asks you, "How are things going?" Answer, "Better than ever in my life!" Learn to be deliberate in a positive manner.

Exercise regularly. "Mens Sana in corpore sano". Exercise promotes mental toughness and at the same time is the Fountain of Youth.

“You build courage when courage seems to fail. You regain faith when there is little cause for faith, and create hope, when hope is lost. Learn to laugh, never forget to cry. Be serious, but don't take yourself too seriously.” —Gen. D. MacArthur

DREAMS

“I had a dream the other night that I grew some short black hair. A little *more than hopeful*, since my hair used to be gray. Ah well, still a Naked Noggin. ;-)”

“Interestingly....I had a dream the other night that I fell in love with an AT man. All I remember is the comfort of not having to explain everything......”

“Last night I had a terrible nightmare that I was being attacked by skinny, starving, angry mice. One of these mice was tangled in my hair and was biting and scratching to try and get away. In the dream, I was lying on the floor and my long brown hair was stretched out behind me, except for this big tangle where the scary, angry mouse was trapped. I kept screaming, "Where's Frances! Go get Frances!" (Frances is our cat) and "Get that thing out of my hair!" At last my son came to my bedroom and told me over and over, "There is nothing in your hair. Frances is by the window. There is nothing in your hair. You don't have hair. You have a hat on..."until I finally woke up enough to hear him and stop screaming. When I finally woke up, I was really, REALLY glad to be bald!!!”

Freud once argued that the "interpretation of dreams is the via regia to a knowledge of the unconscious". He proposed that dreams manifested an unconscious ideation or a need for fullfillment. Some of us have dreams of every type and nature, the I am thin dream, the I forgot my clothes, but always have on underware dreams, the I sex with people I know and have to see them at church dreams (and I don't even think they are attractive), the someone I love dies dreams, and the I cut someone up and got away with it dreams. However, for many, the worse ones are those that have to do with their hair.

Even though many of our participants have accepted their condition and recognize the fact that regaining their hair is improbable, the unconscious wish for hair may manifest itself in dreams. The desire may be expressed in symbolic fashion, displaced, have sexual conotations, be an expression of an anticipatory coping mechanism, or be quite concrete. For some, different senses may be affected. The end point is that having dreams about having, regaining, or loosing all of your remaining hair, is quite normal. In the beginning they may be I would have terrifying nightmares about losing the rest of it. After being bald for many years our dreams are usually about growing your hair back, that it is very short, or that you have long locks of hair (even if you never had them). Some examples are given from our archive of patient information:

Case History 1

Anticipation:

“When I had AA, on more than one occasion I had what I call my "Kojak" or "Yul Brenner" dream. That is, in my dream, I had no hair. These dreams seemed very real and I was always relieved when I woke up and found that I still had my hair.”

Case History 2

Different senses being involved:

“Since I have had AU, I have had dreams about my hair growing back. They seem to be more tactile than visual, i.e., I can feel some stubble and I am usually trying to get my wife to feel it, too. I don't think I ever get to the point in my dream where I can actually see the hair. (Although in general, I don't know what I look like in my dreams - the old me, the hairless me, or the be-wigged me.) I am always disappointed when I awaken to find out that I was only dreaming.”

Case History 3

What is really important for a person with AU for 21 years?

“I still have dreams related to Alopecia, never about getting my hair back, but always my eyelashes.”

Case History 4

Something tucked away that I don't allow to express during wake time or just wishful thinking?

“Several times throughout my life I've had very, very vivid dreams in which I had hair. It felt so realistic that I was almost surprised when I woke up to find that I had none. The weird thing is that I've never really had hair, so I wouldn't "know" what it felt like.

“On the same subject, over the years many people (teachers, friends, relatives) have confided in me that THEY have had dreams about me with hair, ranging from very short to very long, white to red to black. They always seem a bit embarrassed to tell me, but we usually end up having a good laugh about it.”

Some people find their dreams sexually exciting (no offense intended). For me, this suggests that our sexual and love relationships are closely linked to our hair. This may be a truth which helps us understand the devastaion of our hairloss.

It may be a shocker the first time you dream about losing hair. Some patients may be on denial until that dream. Then you realize that if it reaches your subconcious it is a part of your life whether you want to acknowledge it or not. There is no getting away from it, no chance of denial. It is with you and you have to learn to cope with it in reality. The whole idea of having to deal with it, even in your sleep, is stressful. You may feel better by telling your best friend about the dream(s). Verbal acknowledgement of fears helps a lot.

Disturbing dreams may be quite emotional. You can sob while holding in your hand a huge clump of hair when in reality this type of fall out has never happened. Maybe you are grieving subconsiously. In some patients nightmares are the result of restless sleep or difficulties falling asleep and depression. It may be a part of the fibromylagia syndrome (talked about in some detail in this section). Elavil (a tricyclic antidepressant) may be of use in some of these patients. Another useful and over the counter medication is melatonin. At night melatonin is produced to help regulate our sleep cycle. The amount of melatonin seems to decrease as we get older. This may offer an explanation as to why younger people have less trouble falling asleep than older people. There are vague warnings in the drug's information brochure that people with immune problems should not take this supplement.

ENVY

Sometimes pangs of jealousy can be perceived from our "friends". These incidents may take you by surprise but occassionally they should be expected. One moment these individuals act as if they are there for you and the next moment they seem not to withstand you. Who is having a bad hair day anyway? These people may be jealous of the "perfect" way we look with our wigs. No greying of hair, excellent styling, etc. These people may need a dose of attitude adjustment called reality. It takes quite some time in the morning to apply the makeup just right and to comb the hair just the way you want it. On the other hand, they may be jealous of the way you may be facing your condition. Facing up to loosing all of your hair and remaining bouncy, confident and reassuring to others about your ordeal, etc. Maybe you are dealing with your alopecia much better than they are dealing with their personal problems. If your "friend" doesn't appreciate your healthy self-esteem then maybe he/she wasn't the friend you thought they were.

EYEBROWS AND EYELASHES

“I have noticed that since losing my eyelashes my eyes are irritated a lot more frequently and I am constantly using eye drops. As well my nose is constantly running, so everywhere I go I bring eye drops and tissue.”

“...Like you I have to keep eyedrops in the house because of irritation. I find artificial tears ideal. Have you tried hypo-allergenic make-up?”

“It's been quite a challenge to perfect my make-up. I am slowly learning the tricks... My biggest pet peeve is when I'm sitting at work and I have an itch on my face. The next thing you know I've scratched my eyebrow right off!”

“...I find that I sweat more NOW than I did BEFORE I developed AU. It's especially bad when I do aerobics or work out on our walk fit. That's when I miss my eyebrows!!! I have to keep a towel nearby! It's more on my head than anywhere else." To which another member answered, "You're right about the sweat running down your face when working out. I never thought about the NEED for eyelashes or eyebrows. When this first happened, I was washing my head---of course being use to using a lot of shampoo because I had such long thick hair. I was cleaning my head the shampoo came running down my face straight into my eyeball. That was PAIN! I don't have to buy as much shampoo anymore. I didn't realize how much I used.”

“Yes, I am AU, unfortunately. I used to say "at least my eyelashes are still here", and boy, wouldn't you know it, bam! I am now a firm believer in jinxing and I weigh everything before I say it.”

“Yes, I have learned not to scratch or rub my "eyebrows." Since I don't always draw them on if I'm just hanging around the house, I also have to stop and think a second as to whether I've got 'em on or not. I've asked my husband to give me a gentle nudge when we're out if I've inadvertently rubbed one off. I've always got that makeup pencil in my pocket. I've been out a couple of times without it, looked in the car mirror and thought, "Oh great, now what do I do? Get out the ballpoint pen? Dip my fingertip in the dirt and apply to my brow line?" Maybe I should have rubbed off half the other eyebrow, too, and let people think it's an avant-garde fashion look.”

“Forget about false eyelashes and me! I tried them for an experiment a few weeks ago, and it was a disaster. There were eyelashes and glue all over my face, and I looked like a creature from a Tammy Faye nightmare!”

If your eyebrows and eyelashes disappear, glare and dust may represent a problem. Some of our participants have found it useful to wear sunglasses, others wear bangs (or a fringe for our British audience) in their wigs. There is another reason to wear glasses with window-lenses (no correction). You may happen to look better in glasses and in addition they can seat high enough on the bridge of your nose so as to cover where the eyebrows used to be. If the attendant optometrist is ignorant but basically a good person, he may think you have cancer and give you a 25% discount on the lenses! Eyeglasses may also protect you against a possible corneal abrasion caused when a foreign body, not filtered by the eyelashes, lands in your eye.

Missing eyebrows can also be covered with false "bangs". The bangs may be attached to hats with velcro. The Tender Loving Care (TLC) catalogue of the American Cancer Society includes some synthetic versions. Their phone number is: 1-800-850-9445. Some people prefer hair compliments because they simply circle the head on a string, no fuss, no hassle.

Some people have found no success in using fake eyelashes when they have no eyelashes themselves to use as a guide. An alternative is to use an eyeliner pencil but it gets quite tricky, as normally you would use eyeliner just below the eyelashes. Without eyelashes you almost always end up by running the pencil on the inside. As such you can get chronic eye irritation. This appears to be especially true if you wear contact lenses.

If you are going to start using false eyelashes, remember to always carry a tube of eyelash glue in your handbag, you never know when the eyelash might start sliding off. There is nothing that can ruin a nice evening more than having to worry that your eyelash is going to fall off! Also, be careful when applying the glue or you may end up by giving yourself an inexpensive "eye lift". That is, when you open your eyes, the lid is glued open... almost like when the kids in the back of the bus used to turn their eyelids inside out! There are somethings that you can do that may help:

Some tips for using false eyelashes (given by Ms. Peggy Knight a Medical Image Consultant and an AA patient herself):

“You can find inexpensive lashes at most drug stores. The most important thing is that you buy the thinnest and shortest lash available. An invisible band which has been individually tied will last longer.

“Do not wear the lash as it is out of the box. Using manicure scissors, cut the band to fit the eye, then cutting into the fiber take small snips giving the lash a shorter more irregular look." Remember that eyelashes can be trimmed as far as width and length to fit the eye and seem natural. Some people obtain good results wearing a pair of eyelashes simultaneously. The first one is cut fairly short and is used as a base, the second is trimmed to the length you desire. With two lines of lashes you may get a more realistic looking lash line.

“After you have mastered the glue application and it is set, go over the lash with a mascara brush. This gives you a very natural look.

“Allow an extra 15 minutes the first few weeks of lash application. Some patients have had more then their share of tears because of rushing. You will find that with practice it will take only a few extra minutes.

“A liquid eyeliner made by Lancome has given good results to a few patients. This product is made to be used over the eye area, but lasts much longer than brow pencils. Apply it similarly to brow pencils making sure to blot it first.”

And above all else; if you wear contact lenses NEVER put them in before you apply lashes. You may ruin several pairs of contacts thinking "Well, I'm just making a small repair....I'll just quickly fix this corner"......bad idea.

I don't know of a eyelash glue that is water-proof. I don't mean one that says it is water-proof, but one that actually is. Some of our members are tired of never being able to swim underwater and have fun in the water out of fear that something will happen to their false eyelashes.

It is important to make sure that the glue you are using is fresh. Once the tube has been opened bacteria has a chance to multiply. This may be the reason some people experience eye infections.

You should also make sure your mascara (if used) and eyebrow pencils are fresh. Mascara should be tossed after a few months and pencils should be sharpened before each use to discard the bacteria, which has formed on the tip.

Wearing false eyelashes is like anything else, it gets easier and easier with practice. At the end of this section you will find some helpful hints provided by Ms. Peggy Knight on wearing false-eyelashes. You can also look in Appendix C for other helpful hints under Other Problems (Eyebrows and Eyelashes). Also be aware that no matter how good you may be with fake eyelashes or drawing eyebrows, you can still defeat yourself by not paying attention to the eyelines. Here are some tips that may help you:

A make-up tip when drawing eyebrows is to sharpen the pencil and draw the hair from base to tip with a feathery effect rather than straight. Something to keep in mind is that natural hair is not all one color. So the next time you are using a brown pencil, mix some browns with the black lines (or whatever colors the brow hairs might be). Eyebrow pencils should be lighter or equal to your natural brow color and definitely in the right tone of color.

After using the brow pencil some patients blot their eyebrows with powder. The powder seems to tone down the starkness of the drawn eyebrows and seems to keep them a lot longer especially amid perspiration. Some people also add a dab of hairspray for the same reason. It also helps to set the color better. This technique is useful when covering a patch of hair loss. It is very difficult, however, to draw every single hair when all of the eyebrow is missing.

A company called Senna Cosmetics (1-800-537-3662) (in CA (310-274-1028)) offers stencils for drawing eyebrows. The product is called Form-A-Brow Kit, and it's $32.99 thru the catalog. The company is based in Valencia, Calinfornia. I think it would look good with partial brows, if you cover your whole brow for even color. It has 3 little plastic cards with cutouts of 3 different sized brows (normal, fine and full). It comes with 3 different brown-brown/black powders and 2 brushes. You put 3 dots on your brow (one where it would start just above and even with the inner corner of each eye, one at the top of the arc, and one at the end) so they will be relatively even (remember, no one's face is entirely symmetrical). Then you place the stencil cutout over the dots to line it up and fill it in with the powder on the brush. It is easier when a makeup artist shows you how to do it. It may take several tries if you are learning from the instructions. Senna does not have a website. The owner said if you call to order one, and mention the word "alopecia," they will give a 10% discount. If anyone wants to order 12 or more kits (setting up a wholesale account), they will discount 50%. The kit comes with instructions on how to apply them, but you can ask for a additional printouts, or a copy of their catalog that has instructions in it. Also, there is a website called eyebrowz that has brow stencils in the shapes of famous people's brows.

A product by English Ideas (800-547-5278) called Brow Last (also available in some stores) is a liquid that you brush over your stenciled on brows to seal them (keeps them from rubbing off). It's great. The whole things takes about as long as it takes to put in contacts or to put on mascara (remember that??!?). A cheaper alternative to the Brow Last which is $18.00/bottle is Liquid Bandade. Same size bottle for only $2.00 and no shipping charges. The only problem is its hard to get off, so use it when going to swim or going to sweat. The best way to take them off is to add more and wipe it away while wet. Also, you may try putting a little brown shadow on over them after it dries and it will take away some of the shininess. Another problem is that it is shiny and that there is a slight odor when you first put it on. Liquid Bandade is available at most drug stores.

An interesting alternative for those missing eyebrows is to have them tattooed. Dermatologists refer to the procedure as intradermal pigmentation. Can you imagine scratching your eyebrows and not having to worry about the make-up smearing or coming off? Or, having someone with glasses kiss you and not seeing your eyebrow walk off on his lens? For some reason tattooes are considered an option primarily by women. They don't generate a lot of enthusiasm in men. Some would say that they are getting used to the AU as time marches on, but I wonder about an image problem. Maybe it is something related to that old phrase, "Real men don't eat quiche, or, as the saying goes, "Vanity, the name is ME".

In some states you have to be 18 years of age or older to get tattooes or body piercing. If you decide on tattooes first consider the color. When old and gray, black eyebrows and eyeliners may look strange. I have also heard of a story where a woman tattooed her eyebrows. Then....her own hair grew back.....BUT NOT IN THE SAME PLACE AS THE TATTOOS (Ouch!!). She looked like a Picasso. Tattooes usually fade after 5 years or so, but they can be touched up. A negative aspect about tattooing is the possibility of developing an allergic reaction to the dye or an infection. Allergies are a trait of alopecia areata. Any attempt at tattooing should be preceded by testing for allergies (some do this behind the ear lobe). A woman who was allergic had weeping eyes all day long and nothing, not even laser surgery helped her. She looked HORRIBLE!

"Permanent" tattoo ink for earth tones contains iron oxide which consists of small particles of metal within the dyes. In the event you would ever need to have an MRI done of your brain, the magnetic fields may cause you to experience a heating or pulling sensation. Otherwise let the technician know so he/she can compensate the settings and get a clearer picture.

There are non-permanent but "natural" tattooing techniques using henna's, etc. The disadvantage is to repeating the time, discomfort and expense over time. The eyebrow tattooes themselves are not permanent. They will probably last for 4 or 5 years before fadding. If anything the faded guidelines are beneficial in drawing on the pencil ones. Some permanent make-up persons are adamant about ALWAYS using a sunblock over the brows to prevent fading. In this case the sunblock may run into your eyes which is very painful. Baby sunblock with 45% blocking is the least irritating.

I have not heard of a single case of HIV infection transmitted by tattooing techniques. Still, infections around the eye may be tricky and dangerous. There are case reports of reactivation of herpes simplex infections after tattooing and others that developed verrucae in the area of pigmentation.

If you decide in favor of the tattoes, remember that multiple sessions are going to be needed. You may need several consultations in which the individual tattooing the eyebrows will explore your feelings (expectations) and if assured will then proceed to draw various shapes in different colors until you are satisfied. The color will be selected according to your skin coloring and age. He/she will then photograph what you want and make notes as to the colors, shape, etc. When you go in for the actual tattoo, the eyebrows will be drawn again exactly as you wanted with the result serving as a template. You can hold a mirror and comment on every step of the way. Since some colors may look different depending on a person's complexion, the tattoing may take several appointments. The first appointment may start by introducing a subtle color and then waiting for two to three weeks to see how it reacts. Then appropriate colors are added to finalize the procedure. Gradually go darker because too dark eyebrows may be to obvious. The final visit is just for touch-ups.

The machine used is much more gentle than the one for used regular tattooing and topical salve is used to numb the area. A good professional will ask you if the tattooing is hurting and whether you need more aneshetic. If the artist is associated with a physician, the MD may prescribe a steroid to reduce the swelling. For the same reason you may also use ice packs.

The permanent eyeliner is more painful--brief, but painful. Because of the thinness of the skin, the make-up artist is unable to anesthetize without blocking the acceptance of the tatoo ink. The eyeliner may have to be gone over twice or three times.

It seems that some Japanese women have only half eyebrows, the inner-most half. This appearance is somewhat inconvinient in our culture. I know of one Japanese lady who is going to avail herself of a laser tatoo process that creates an eyebrow consisting of grey-tone dots instead of multiple lines. It sounds very interesting.

People performing this trade do not need a certification, so get good recommendations. The results are normally less than optimal as the tattooed skin itself has a shinny appearance uncharacteristic of hair. Tattooed eyeliner (above and below the eye) are usually done for $400. Eyebrow tattooes (done as sepaate hairs and using different shades) usually cost $500 to $600.

Some absolute medical reasons not to tattoo are (from LC Parish and GP Lask, Aesthetic Dermatology, McGraw-Hill, 1991):

You can obtain more information on permanent eyebrows on Tattoo Faces by Design 1-800-322-3741. Gena G. Harrison is a Board Certified Dermatologist who has performed over a thousand dermal pigmentation procedures since 1989. She has a pamphlet on intradermal cosmetics claiming that the pigment is removable. Her Toll Free number is 1-888-352-6799.

If you pursue the possibility of false eyelashes/eyebrows Ms. Holly Oyler has developed a product line specifically for people with alopecia areata. Ms. Oyler has had AA herself for over 30 years. Ask her about the lashes and pencils for brows. These products are usually made with higher melting point waxes to provide a firmer product. The inert pigments are also special because FDA prohibits the use of coal tar products in the region of the eye.

Holly Oyler
Holly Cosmetics
4012 Dupont Cr, #108
Louisville, KY 40207 800 222-3964

Ms. Oyler also sells a product called brow stay. You apply it over your eyebrows and they are supposed to stay on all day.

Artifical eyebrows are now available that are made of synthetic or natural materials. The hair is usually knotted into a net and glued in place. Some actors use a special type of artifical eyebrow called crepe hair. This type of fake eyebrow is made from braided wool and comes in a variety of colors. As with other glued on prosthesis, a contact dermatitis may ensue as a reaction to the adhesive. Artificial eyebrows designed for the stage are not recommended for people with aloepcia. They are big, dramatic, and difficult to cut down to normal size.

Some comments by one of our members:

“I tried the synthetic brows from Beauty Trends, and my reaction to them is mixed. When I first put them on, I thought wow, this really looks like hair, much more authentic than drawn-on brows. But in the end, I don't use them anymore for the following reasons:

  1. They were hard to get off at night. The glue is very strong, and was pulling out the few real eyebrow hairs I have.
  2. They got kind of glommed up with glue, once when I made the mistake of putting the glue on the brow piece instead of on my skin. This made them stiff.
  3. They were just more bother than I thought they were worth, but keep in mind that I really like to keep things SIMPLE.”

Artificial brows have many uses:

  1. A fur stoll for Barbie's night on the town
  2. They double nicely as wooly bugger fishing lures
  3. Tie them to the end of a string and it's hours of enjoyment for the family cat
  4. Throw them into people's martiini glasses at a cocktail party when they're not looking. He, he, he.
  5. Take a zoology course and pass them off in your mandatory insect collection as caterpillars
  6. ...Or try slipping one into a sandwich or soup at a restaurant when you're down to your last bite—free lunch!

The following story may be unrelated to autoimmune hair loss, however, some people believe it has helped to cure the drudgery out of painting eyebrows. It is an old Chinese folktale that can briefly be summarized as follows:

There was once a Chinese maiden who as a little girl was hit in the face by a rock as she played in the garden of her father's estate. When the wound healed it was discovered that her eyebrow was gone - the scar healed over quite well but the eyebrow never grew back. When she grew up, people said, "Oh, how sad! She is so beautiful except for that missing eyebrow!" Eventually the man to whom her family had betrothed her came to take her in marriage. When he saw that her eyebrow was missing, he reassured her that it would be no problem. "I am an artist and a calligrapher," he said. "I will paint for you each morning an eyebrow as slim and graceful as a willow leaf." One morning, he was painting on her eyebrow, and he asked her, "How did it happen that your eyebrow is missing?" She told him the story of being hit by a rock, and he asked her, "Was this the garden in which I first beheld you?" and she said yes. "OH!" he exclaimed. "When I was a child, I once threw a rock across that wall, and I heard a young girl cry out. I ran away to avoid being punished. It was I who took your eyebrow, and it is I who have given it back!!!"

I always liked that story for some reason. Anyway, painting your eyebrows everyday you can become a soothing art form.

EYELID INFLAMMATION

“Sometimes the skin around my eyelids seems to get irritated and a bit itchy, causing my eyes to get weepy. This might last for several days at a time. It never happened before I lost my eyelashes, so I figured it's related to that. It's not that something is getting into my eyes, it just seems to be the edge of the eyelids that are affected. It hasn't been painful, just mildly annoying.”

“I miss wearing my eyelashes, but the glue got to where it swelled my eyes shut (a little worse than gluing them!.”

“I get that redness in my eyes, too. This happens especially when I wear my glasses. I thought it might be having my eye air trapped behind the lenses with the fumes from the sunblocker that I wear on my tatooed eyebrows.

“I believe that the lack of eyelashes causes more changes than a person might suppose. For example, I never wore sunglasses. I squinted my eyes to keep out the sun. Now, sans eyelashes, squinting does not work. My eyes are not able to screen out the brightness. I always wear sunglasses while driving, walking, etc. It was such a loss to keep losing sunglasses. Now, I need them so badly that I don't lose them anymore. Also, I believe that I am more sensitive to smoke and cleaning products. Again, I figured that the eyelashes are not there to do any screening. Blowing air is a problem, too. The eyes seem to be especially vulnerable.”

Since the eyelashes protect the eye by filtering foreign bodies, their absence may lead to chronic irritation of the eye. Patients with alopecia areata are also prone to allergic reactions and irritant eczema. If you and other members of your family suffer from dry skin or asthma this may be the diagnosis. Some recommendations for treatment include house dust mite avoidance (i.e., barrier material on mattresses and pillows, regular vacuuming of bedroom, the use of anti-mite sprays) and topical steroids.

Another complication that I have seen in patients is seborrheic blepharitis [blepharitis meaning inflammation of the eyelids and seborrheic means having to do with the sebaceous (sweat) glands in the skin]. Its manifestations include irritation (the feeling of a foreign body in the eye), burning, and itching of the lid margins. The eyes appear "red-rimmed". Quite often there are yellowish incrustations along the lid margin. The usual treatment is the daily loosening of the crusts with warm compresses followed by removing the scales with a damp cotton applicator (or face cloth) and baby shampoo. Those cases with a superimposed bacterial infection may need to be treated with an antibiotic ointment. Rarely, topical steroids are used when the inflammation persists despite treatment, but the routine use of steroids is discouraged. In any patient the long term use of these substances may lead to severe bacterial or fungal infections. Patch testing with irritants is not helpful and may be misleading.

If the eyelash glue promotes an allergic reaction you may try using Diamond brand hair-bond glue. It was not intended for use in this area, however, some people have found it very effective. It is hypo-allergenic, comes in a dark shade which acts as eyeliner, is easy to remove when you wish to remove the lashes, but will stay on for up to 2-3 weeks if you just want to keep them on. It is also very inexpensive (about $4.00 for a large bottle) and seems to be easier to work with than the adhesives intended for lashes (q.v.).

FETISHISMS AND OBSESSIONS

“I don't know if it's because I am AU, but I find women with shaved heads sexy. It probably has something to do with nakedness and exposed skin. I haven't been able to convince my wife to shave her head in solidarity with me. (Actually, I haven't even tried.) I am sure there a lot of other men who feel the same way, whether they are AU or not.”

“...My husband just said it isn't the bald head, it's the private parts. Any talk of a wome's private areas catches a man's attention- bald or not.”

The next potential problem appears to be most common for women with shaved heads. The weirdness comes in when people are attracted by (more like obsessed by) a feature regardless of whom it is on. If someone became enamored of you strictly because of your slick pate, and that person's only focus was on your scalp to the exclusion of the rest of your personality and talents, would you feel very special or flattered? This is a problem that women have dealt with for centuries. If she has an overly endowed chest, she may never be dealt with as a whole person. She is stereotyped from the start and has to work twice as hard to be perceived as intelligent and capable. That's just one hurdle. The next is the so-called admirers of her figure. While some are harmless whistlers and starers, others start fantasizing about a pair of boobs, without ever considering the person that owns them. That becomes scary. When people move from admiration to obsession it is not flattering. Attraction is one thing but fetishism or obsession is quite another. When you become attracted to a person because of a certain feature, you normally get to know them a bit better before declaring your undying love. That's a reasonable attraction. Obsession/Fetish comes in when they declare their love based on that one feature and don't know anything else about the person, or undertake to learn about the person. This is similar to the way a rock star groupie would act. It goes beyond normal and reasonable. A lot of the messages from the "bald women admirers" are things like "I want to shave a woman's head" and "I like pictures of girls getting their heads shaved better than the ones with alopecia," blah blah. Like it's a big control and humiliation thing. Another thing is how condescending they seem, like shame on you for wanting hair and not going out bald. There's just a difference between admiring a woman who has shaved her head and being strangely interested in women who have lost hair against their will. Check out the Hair Group Message Board and be prepared to be either amused or appalled.

FIBROMYALGIA

“...my image was one of dobermans (dogs) gnawing on my joints. I'd be in tears at night from the pain. Iwould also wake up feeling myalgically sore - as if I'd been beaten up while sleeping.”

Fibromyalgia is a little publicized complication in some patients with alopecia areata. The condition is characterized by widespread and chronic pain of the muscles and joints, chronic fatigue and disordered sleep along with multiple other complaints (e.g., dizziness, clumsiness, irritable bowel syndrome). The onset and course of this illness is excerbated by physical and emotional stressors. Digital palpation should be performed with an approximate force of 4 kg. For a tender point to he considered "positive" the subject must state that the palpation was painful. "Tender" is not to be considered "painful." The presence of other medical disorders does not exclude the diagnosis of fibromyalgia. The typical patient is a middle age woman with symptoms of depressive anxiety. Diagnosis relies on clinical insight, there are no specific laboratory tests to confirm its presence. Even the diagnostic criteria given below provide an adequate diagnosis in only 88% of cases. The natural course of the condition somewhat resembles alopecia areata in the sense that it appears to have a mind of its own (unpredictable remissions and exacerbations). Treatment is basically with tricylcic antidepressants, nonimpact aerobics and patient education. Recent work has shown that patients with CFS have a reduction of hypothalamic-pituitary-adrenal(HPA) axis activity due, in part, to impaired central nervous system drive. These observations provide an important clue to the development of more effective treatment to this disabling condition (Ann N Y Acad Sci 1998 May 1;840:684-697).

The following is a definition from the American College of Rheumatology (1990 criteria). From Wolfe F et al: The American College of Rheumatology criteria for the classification of fibromyalgia: report of the Multicenter Criteria Committee. Arthritis Rheum 33:160 1990.

  1. History of widespread pain.

    Definition. Pain is considered widespread when all of the following are present: pain in the left side of the body, pain in the right side of the hody, pain above the waist, and pain below the waist. In addition, axial skeletal pain (cervical spine or anterior chest or thoracic spine or low back) must be present. In this definition, shoulder and buttock pain is considered as pain for each involved side. "Low back" pain is considered lower segment pain.

  2. Pain in 11 of 18 tender point sites on digital palpation.

    Definition. Pain, on digital palpation, must be present in at least 11 of the following 18 tender point sites:

    • Occiput: bilateral, at the suboccipital muscle insertions.
    • Low cervical: bilateral, at the anterior aspects of the intertransverse spaces at C5-C7.
    • Trapezius: bilateral, at the midpoint of the upper border.
    • Supraspinatus: bilateral, at origins, above the scapula spine near the medial border.
    • Second rib: bilateral, at the second costochondral junctions, just lateral to the junctions on upper surfaces.
    • Lateral epicondyle: bilateral, 2 cm distal to the epicondyles.
    • Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.
    • Greater trochanter: bilateral, posterior to the trochanteric prominence.
    • Knee: bilateral, at the medial fat pad proximal to the joint line.

For those patients who suffer from fibromyalgia, it's important to have amino acid testing done (at a reputable lab that specializes in this). There are virtually always deficiencies in amino acids with this population of patients. Studies are being done in Australia (Newcastle Research Group) showing the benefits of amino acid supplementation. Also, those with chronic fibromyalgia show magnesium deficiencies and often deficiencies in intracellular K (potassium) so supplementation with Malic Acid (magnesium) and K is impt, usually relieving the aching associated with the condition. It's equally important not to take too much K as it can cause cardiac arrythmias.

As an aside, those with cfs/fms, gwc, mcs are testing positive for mycoplasma fermentans at an alarming rate. The treatment for this is long term antibiotic treatment (in 6 week cycles, often back to back). There are 5 types of mycoplasma to be tested for. My favorite lab for this is The Institute for Molecular Medicine in Southern California run by one of the top experts on mycoplasma, Professor Garth Nicholson.

FIVE O'CLOCK SHADOW OR THE HATED "SPOTTED OWL" LOOK

“Heaven gives its glimpses only to those
Not in a position to look to close.”

—R. Frost

A five o'clock shadow is a common phenomenon for patients who shave their heads. There are some things that can be done to improve how it looks. First get some sun on it. When the scalp's skin tone matches the rest of your face the dark areas are much less noticible. Also, remember that just as it took time for your beard to be set up when you first started shaving, so too, must your scalp hair. In several weeks you should get a smoother and cleaner shave. When hair starts growing very fast and you are going on a date shave and reshave during the day. A positive aspect of the shadows is that it may inform you as to whether the hair is growing back. It is also worth noting that many people with alopecia areata suffer from a very sensitive skin. Chemicals that act as depilatories may cause severe irritation of the skin for these patients.

The following story provides a helpful beauty secret by one of our participants:

I was quietly munching my veggies the other day at my neighborhood Boston Market when this cool black dude named Damien, who is as bald and glistening as a cueball, strolled over and said, "Love your haircut, man."

"Thanks," I said. "I've got a condition where my hair doesn't grow right."

"Ohhhhh," he said surprised. "I thought you just shaved it to look cool."

"Yeah, last week when the wind chill factor got down to 10 below, it was cool all right."

He carefully inspected my pate, counting the number of knicks and scratches that I had inflicted on myself with my trusty Gillette.

"You know how the Boyz 'n the Hood keep their heads lookin' cool?" he said, sounding ike a dermatologist giving a second opinion.

"How?"

"With this!" He reached into his rear pocket and triumphantly whipped out something that looked for all the world like emory cloth: black, flexible sandpaper with very fine grit.

Whereupon he began industriously sanding his scalp!

"It makes you look great, it keeps your head shiny, it makes your skin tougher and smoother, and the women love it. I always keep one in my hip pocket to get rid of a six o'clock shadow. Up there. Women have been using these things for years to keep their legs smooth; now us guys use 'em."

Soooooooo, a few days later I got down to Revco drug store, made my way over to the women's depilatory section, and sheepishly purchased two paks of Hair Off Mittens, like a teen-ager shyly buying his first pack of prophylatics.

The kind I bought is called Hair Off Mittens, imported from Canada by CCA Industries of Rutherford, N.J., 07073, but I have to assume that this company has competitors. I paid $4.95 per pak of three mittens -- but I think you could save money by going to Home Depot and buying a year's supply of 600-grade emory cloth.

It worked: Now on my arm I've got a beautiful blond named Betty, who has long luxurious ringlets of cascading hair, who says she loves bald-headed men....

And, what's more, I've solved the eternal mystery of what basketball players talk about in the shower.

And even more importantly, I have finally figured out what women talk about when they leave at dinner in two's to go to the ladies' room. I think.

GOING TO THE HAIRDRESSER

“I can't stand going to a salon and having my hair fooled with in front of everyone. It has been 2 years since I've gone. What you can do is find a hairdresser that works late, and see if you can get their last appointment. Explain that you have alopecia (most hairdressers know right away what that is. My old hairdresser is the one who diagnosed me 5 years ago) and that you're not comfortable having other people around while you're "exposed."”

One of the members of our list server is a hairdresser in a large, busy salon. She has seen all KINDS of people with all kinds of hair situations come in every day and 99% of them are self-concious about how they are looking to others, even if they don't have alopecia. What I'm trying to say is the other clients are not necessarily checking everyone else out, for fear someone might catch THEIR eye and see them with color on and every hair standing on end, or looking like something designed to pick up radio waves with foil all over the place. As has been said before, others pick up their attitudes from ours.

GRIEVING

There is a strange item of jewelry that was used during Victorian times. It was quite the fashion then to memorialize the passing of a loved one by creating mourning jewelry. One such item is hair jewelry, where hair from the deceased is braided and inserted into a small gold and silver casing, to be worn by the mourner. This was also done with sentimental hair jewelry, of a living loved one. Now these examples are viewed as collectibles, but I think that in many ways we all mourn/grieve for our lost hair and how it used to be. It seems we look at hair in terms of grieving in many different ways....

The acute loss of hair in an adult often brings about a grieving process. Anger and social withdrawal prevail. Patients have difficulties accepting the condition and often obssesively ask themselves, "Why did this happen?" It is an emotionally trying experience, especially, for those loved ones interacting with the patient.

It is fine and healthy to mourn the loss of ones hair. In fact i feel it is necessary. But when we move on past that, we should feel no shame, and neither will our kids. The only shame my kids feel is when i dance in public!!!!!!! But that's their hard luck!!

Grieving should be looked upon as a normal process that lasts a number of months or even years. Several principles apply to the situation:

  1. Allow the patients to share freely his/her emotional ordeal with you. Listen, let the patient talk and repeat him- or herself.
  2. Examine how the patient is adapting to stress and provide appropriate coping stratagems. It is useful in this regard to consider the role hair played in their lives- not to minimize it, but to help put it in perspective. Some parents are not over protective but rather display a stiff upper lip. They probably have more problems to deal with than loss of hair. Sometimes this is exactly the right thing to do, i.e make it a non-issue and help their child focus on the things that are really important in life.
  3. Find support from lay organizations, people that have been there and survived the ordeal.
  4. Gather as much information about the condition. Be strong through knowledge.

HIDING THE PATCHES

Besides styling some people become quite clever with the use of headbands and scarves to cover most of their patches. Some patients have used eyebrow pencil successfully. A water-proof pencil might solve the problem of it wearing off due to perspiration. With a pencil, you can color the smaller areas with light strokes (feathers) to make them look less obvious. Probably two pencils with some color variation would make them look even more natural, like a taupe and a light brown for someone with medium brown hair. I found that anything, including eyeshadow, that covered up the "shine" minimized the look of the bald patch. Even an off color showed less than the obvious pink of the scalp. If you have dark brown hair, buy Revlon's eyeshadow blackest brown (or is it darkest brown?). Dampen the spot with a little bit of water. Just get your finger wet and rub the spot a little, or put a little bit of moisturizer on it. Apply the eyeshadow while still damp and it will go on thick, dark and even. It only comes off if you rub it off or wash your hair, not while sweating. Other people have used wax crayons and vegetable dyes to diminish the contrast between the pale scalp and the hair. A friend of mine hides her boyfriend's spots by using brow powder a bit lighter than his natural color first, then going overtop of it lightly with a mascara wand in a color matching his hair - that really blends it well. A more professional appearance may be obtained with camouflage cosmetics. Sources of camouflage cosmetics (named in parenthesis) include the following:

Atelier Esthetique (Veil)
Suite 209
386 Park Avenue South
New York, NY 10016
Ben Nye Company, Inc. (Coverette)
5935 Bowcroft Street
Los Angeles, CA 90016
Dermablend Corrective Cosmetics (Dermablend)
P.O. Box 3008
Lakewood, NJ 08701
Fashion Fair Cosmetics (Cover Tone)
820 South michigan Avenue
Chicago, Il 60605
Joe Blasco Cosmetics (Dermaceal)
1708 Hillhurst Avenue
Hollywood, CA 90027
Kryolan Corporation (Dermacolor)
132 Ninth Street
San Franciso, CA 94103
LS Cosmetics (Natural Cover)
P.O. Box 32203
Baltimore, MD 21208
Lydia O'Leary (Covermark)
1Anderson Avenue
Moonachie, NJ 07074
II-Makiage (Cream Makiage)
P.O. Box 1064
Long Island City, NY 11101
Pattee Products (Corrective Concepts)
European Crossroads
2829 West Northwest Highway
Dallas, TX 75220

A product called Couvre (a colored cream) is specifically made to fill in bald spots on the scalp. It costs about $20/tube. It is an effective concealer that is waterproof. The 800 telephone number to order is 443-4521 or you can email them at couvre@couvre.com. One inconvinience is that when you apply it to a spot, it starts out nice and dark, but after trying to blend it, or smear it around, it just rubs off. Some people have tried using more, applying it with their finger instead of the sponge, on a damp scalp, and on a dry scalp - it still ends up rubbing off, looking lighter than it should and splotchy.

There is another product called “The Great Cover Up,” which is more pricey than Couvre and I can't for the life of me see how it can effect the transformation to one's head that its 'before/after' photos would have you believe it does. That said, it's not too bad for smaller spots - BUT the one thing that's not so great is that it has a very very fine powdery texture and you sprinkle it on your head like pepper (not that I often go around spinkling my head with condiments, but you know what I mean), and no matter how carefully I do it I always end up with sprinkles all over my face and all over the bathroom sink/floor/shelves - in fact, this stuff gets EVERYWHERE! Mind you, perhaps I'm just malcoordinated, who knows.

ITCHING

As stated previously some patients complain of itchiness (pruritus) in the scalp before or during the loss of hair. In this setting, the itchiness is probably due to the release of inflammatory chemicals acting on cutaneous nerve endings and signifying an active disease process. If itching is the result of an active inflammatory phase for the alopecia, the institution of topical or injected steroids may prove to be of benefit.

The psychological state of mind produced by the hair loss (e.g., anxiety or depression) may exacerbate the itchiness. Treatment for the anxiety and/or depression brought forth by alopecia areata may alleviate the itching.

An extreme, but not uncommon case, was provided by one of our participants:

“I have always had a very strange itchiness at times that seem almost deeper than the skin. I have taken antihistamines at night since I was 8 years old so that I can sleep. It always seems worse when I am extra tired or too warm. My skin just seems to prickle and I can't relax at all. It is very annoying at a restaurant or a movie, because I can't just sit still and enjoy it." It is not surprising that such a situation would add a lot of anxiety to an already fragile mood state.”

Similar expressions by other patients:

“It seems that as I itch one spot, another spot starts to itch. I noticed others here have mentioned this on occasion. What I have experienced as a prickling feeling is hard to describe, kind of like hundreds of little pin pricks moving about the upper part of my body including my arms and head, like my pores were erupting. It seemed that it would start when I was hot, even taking a shower. It happened mainly in the winter when the humidity is low and I didn't sweat. In the summer it didn't bother me too much, except taking a shower occasionally. This year I noticed it hasn't bothered me too much.”

“I had a similar problem, not with itching, but tingling... like a strange 'minty' sensation all over the area of my head that's experienced the hair loss. I didn't hurt, but was extremely annoying...and mainly served as a continuous reminder of my hair loss.”

Itchiness may be the result of a coexisting condition such as seborrheic dermatitis. The scalp of these patients is dry and scaly with similar changes manifested in their eyelids. In still other patients, itchiness is the expression of a contact dermatitis. Without the hair, the scalp is more thoroughly exposed to the active chemicals of shampoos and conditioners. The harsh chemicals result in inflammatory changes (redness and swelling) and even occasional vesicles with exudation. The increased sensitivity may make a ceiling fan an annoyance and wigs too hot to wear.

Remember that many patients with alopecia areata are predisposed to atopic conditions. Atopics have a lower threshold for itching and vigorous excoriation than non-atopics. Still another confounding factor related to the condition per se is itchiness due to therapy. In this regard psoralens with ultraviolet radiation (PUVA) has been reported to have itchines as a side effect.

If itchiness is the result of a dry skin adequate lubrication will produce a protective layer for the skin. Whenever this layer is absent (e.g., from overexposure to water, soaps, or your eczema/alopecia areata) microscopic fissures develop which result in small pockets of inflammation. The manifestation of this inflammation is itchiness. If this is the case with you I would suggest using a lubricant to cover the tiny fissures and hydrate the skin. Antihistamines are the classical prescribed medication, but at "anti-itch dosages" they produce sedation during the day. There are many lotions in the market containing menthol, camphor, etc. They produce a mild tingling of the skin, thus diverting your mind from the original itchiness. Cool compresses may also be of benefit. Agents like calamine lotion may act by initially cooling the skin (because they evaporate quickly), but then the resultant dryness may enlarge the fissures, the inflammation, and the need for more calamine lotion. Commercial preparations containing benzocaine (e.g., sunburn medications) should be avoided as they may induce an allergic contact sensitization. For similar reasons avoid buying creams and oils that have perfume, dyes, or lanolin.

In some patients, the itching is so widespread that they would literally have to bathe in a type of oinment or lotion in order to hydrate their skin. In this case try a bath oil. These compounds have special formulations of lanolin, mineral oil and other emulsifiers. The active compounds readily disperse in water and cover all of your body while bathing. Bath oils have anti-itch properties and help to hydrate the skin. Just be very careful because they make the bathtub or shower floor slippery. You can also try putting on baby oil while you are still standing in the tub, then towel dry. The result is hydrated, not oily skin.

Some of the available bath additives/shower gels include: Alpha keri, Balnetar, Domol, Lobana, Oilated Aveeno, and Robathol.

It is said that you should get in the tub and get thoroughly wet (5 to 10 minutes) and then add the bath oil. Otherwise, if you add the oil first, when you get into the tub, you get a layer of oil on your skin that prevents the water from getting in. Some of our participants have found that it does seem to help their skin to follow this procedure.

It is also noteworthy, and you already know this, that frequent contact with water tends to DEHYDRATE the skin. The hands can be washed some 5 times per day. Washing them 10 times causes a mild contact dermatitis to the soap. More than 10 exposures after a sustained period of time will produce severe inflammatory changes with cracking and fissuring of the skin.

Itchiness caused by the close apposition of the wig to the scalp can be avoided by using a stocking cap. This cap, usually sold at wig stores, is intended to keep all of your hair up and under the wig. For those of you without any hair, stocking caps are intended to keep the scalp from getting scratchy, acting as a cushion and feeling snug. Some people improvise a generic version of the stocking cap by cutting the leg of a pair of panty hose and use the body part as a cap. It is cheaper than the stocking cap and achieves the same thing.

NAIL CHANGES

“My fingernails are so brittle, they split going up my nail—very painful, so I keep them short.”

“The nails developed pits that looked as if a pin had made tiny dents in rows across the nail.”

“Don't panic about your nails. I have had AU for 10 years. It is not until about 3 years ago that I had my first problems with my nails. I never lost them completely, they just peeled, got very short and weak, then got back to normal slowly. I had no idea that it was related to AU until I got on the listserv. When I went to a dermatologist at that time he said he had no idea what the nail problem was, in fact it seemed symptomatic of being malnourished. I did not have another problem until maybe 1 year ago again which just happens to coincide with some major job changes for my husband and myself, some good some bad and very stressful. Once again the nails are very weak and peeling. I am taking vitamins and a special nail formula pill with magnesium and b vitamins besides and some are growing again. By the way.... I don't seem to have the problem with my toenails! They are ridged but very strong and they don't peel. Kind of interesting.....”

“A lot of manicurists think you have fungus, though, so you may have to explain your condition to them (for the umpteenth time!).”

For pitting, I use an old fashioned nail buffer --it looks like a small brick with a very fine "sandpaper"-like filing surface on all of its sides. Follow that up with a good cuticle cream a couple of times a week and see if that helps (it makes my nails shiny and smooth--reduces the pitting and lines).

The previous post about horse hoof cream reminded me of a cuticle cream I used to use (got too lazy to continue!) and that others I know have used with some success. It's called Healthy Hoof ( I don't know if it was from Straight Arrow) and while it is the same substance that's used on horses, it's sold in cosmetic stores (I bought it at The Cosmetic Center, a discount chain). It was only like $3 for a little cream colored jar with red writing. Maybe that would help Andrew. Also--if he'd go for this--it helps to use cotton gloves on his hands at night over whatever cuticle cream he uses. The warmth generated by the gloves helps to keep the cream on and to facilitate absorption. I also found that buffing my nails keeps them shiny and gets rid of the lines.

There are many shared anatomic characteristics between hair and nails that make them common targets of disease. According to Zaias (The Nail in Health and Disease, 1990), the "hardening" (keratinization) of the upper layers of skin and the formation of the nail are very similar. Zaias imagined a nail rolled up into a cylinder with the nail plate at the center of the tube as roughly equivalent to a hair follicle.

Nail changes have been reported in 5 to 66% of alopecia areata patients. The large variation in reported cases is likely related to how carefully the nails were examined. Changes may vary from subtle to prominent and from those involving a single nail to all of them. Some people believe that nail changes are proportional to the severity of hair loss, however, nail changes have been observed to precede, follow or occur concurrently with hair loss activity. Some of the observed abnormalities include fine pitting, longitudinal ridging, spooning, and the development of thick, opalescent nails. The nail pits are shallow and tend to have a geometric arrangement variously termed as "grid", "screen", so forth. These changes are not diagnostic for alopecia areata and are commonly seen in other conditions such as psoriasis and eczema. The pits can be camouflaged with several coats of base coat/nail enamel or the entire nail may be covered by a preformed (artificial) nail. Several patients have also found useful the use of nail conditioners. These commercial products contain a combination of proteins, lipids and water (an emulsion) which retard dehydration and fill in imperfections.

Sometimes the nail changes may be confused by the primary physician as being the result of a fungal infection. The few cases that I have seen receiving treatment for a fungal infection have made their nails worse or have developed other medical problems such as liver toxicity. If you have nail changes and prefer to obtain the diagnostic impression of a professional please consult your Dermatologist.

There are many theories that attempt to explain the formation of these structural abnormalities, but still we lack definite proof for any of them. Some people believe nail changes are due to a malfunction of the cell that produces the protein of the nail, others think that the nail bed is invaded by inflammatory cells, still others argue it may be a combination of multiple factors. The good news is that the nail changes are often temporary. A patient with alopecia universalis of 20 years duration may have nail changes that prove temporary.

I haven't read about a specific treatment for the nail changes of alopecia areata. However, a good diagnosis is the first step towards effective therapy. Nail changes may be symptomatic of a concomitant condition (e.g., lichen planus, psoriasis). In this case the nail disorder may need a different treatment to the scalp condition.

Some clinicians have attempted to treat the nail changes in similar fashion to the hair loss. Thus, intralesional monthly injections of steroids has been attempted but the therapy has proven quite painful and only temporarily effective. Possibly the best way to treat the nails is to avoid those environmental stimuli that may worsen brittle and split nails. Remember that flexibility of the nail is related to hydration. Dry nails become brittle and are more easily broken. The amount of nail hydration is directly related to environmental humidity. Therefore avoid exposure to irritants which dehydrate the nail. Avoid excessive hydration by using gloves when washing dishes. Keep your nails short (prevent trauma). Avoid the frequent application and removal of nail polish (not more than once per week). Nail polish may have a beneficial effect only by cementing together the fissures and lakes of dry brittle nails. Repeated applications of nail polish (and then remover) may be counterproductive and increase nail dryness. Nail harderners may contain formaldehyde (an agent often implicated in contact dermatitis). A lot of hand lotions contain alcohol which promote dryness. If nails are hard and brittle, apply lubricants to your finger tips (including nails). Calcium, gelatin, and vitamin A do no good to the nails. However, massaging the base of the nail with moisturizer daily may decrease ridges as they grow out. Some of our members have obtained good results by applying baby oil with a q-tip on their cuticles each night before bed. Other possibilities include Eucerin (at your pharmacy) or a product specifically for nails called Barielle (obtained at better department stores like Robinsons-May, Macy's, etc.). A three month supply of Barielle (very small jar) is about $15. It is pretty expensive but seems to work wonders for some people. Doing this while fresh out of the shower should help increase absorption. It takes 6 months for the nail to grow from the botom (cuticle area) to the top. So if you are trying a cure, be patient. (See also biotin.)

I once suggested that a possible cosmetic solution for severely malformed nails was the use of sculptured nails. I had seen cosmetically attractive results in a few patients where the acrylic nail was shaped over the natural nail. However, the experience of the group with this resource was negative.

“Whoever asked about acrylic nails, let me just say that when I did it years ago, the aftermath when I no longer wanted them was TERRIBLE! It took a long time to get what was left of my nails back to normal.”

“I agree, although I've never had the acrylic nails, even people without a nail problem seem to have very funky looking fingernails when they remove the cosmetic ones.”

There are case reports of permanent nail destruction after using acrylic nails. The damage is due primarily to allergies or secondary yeast infections.

PARANOIA

“I think AU is making me even more paranoid. A friend invited me to a pool party. One part of me thinks, "neat." Another part of me says, "Yeah, she just wants to see my bald head." Bouncing in my head is alternating dialogue, "What about my bald head?" " I don't want to get sunburned." " I don't want to get laughs." "I am curious about the feel of the water on my bald head." "I won't go." My friend added that "she can't wait to see me." My paranoid AU says, "What is that supposed to mean?"”

“Since I lost my hair, though, I have had panic attacks and depression. Fortunately, I went for help and have been on Prozac for over a year. I finally got off the anti-anxiety medications and can even go into a crowded store or room without having to run out. There are days, though, when I have a hard time keeping it together. I can't share my "secret" beyond a few select family members and start to panic when I think someone is "staring" at my $2000 wig , wondering if it's a wig. If someone is looking at me too intently, I feel my stomach starting to knot. The other day, my brother introduced me to his friend. I was a basket case. I was convinced the guy was staring at me because my false eyelashes were drooping...or the wind had blown my "hair" back and he could see the edge of my wig...or he could see that my eyebrows were only makeup. Later that day, my brother called to tell me that his friend had told him that he "couldn't take his eyes off me because I was so beautiful." So, how come I don't feel beautiful anymore?”

See also Self Image.

Some people never getting used to the feeling of paranoia about how others are perceiving them, their cap, or whether they actually notice the lack of eyebrows and eyelashes. Sometimes they just want to scream "I'M FINE--I'M NOT SICK--DON'T LOOK AT ME THAT WAY!!"

People we see on the street have their own sets of problems. While they might take notice of us and maybe even comment to those with them, they soon go back to their own thoughts and problems. True, there are some little people out there, but they will find someone to "use", no matter what. I believe all this to be so and it helps me with my main "complaint" that I hated to lose my anonymity because now everyone notices and remembers me. At one time I disliked the malls. Now I don't give it much thought.

However, to me that's only part of the difficulty in adjusting to AU. The "other" side is overcoming what our culture says looks good instead of focusing on real value. The ads for the hair care industry alone can be pretty influential, all the more if you happen to be 10 for example. Some months ago a billboard ad for Pantene featuring (what else) a young woman with long hair appeared around town. And that's just one example. How to overcome that? ...... I have no idea, except for that line we are not our hair.... introspection into the real us ..... looking at values and at others not so fortunate??

Regarding everyone staring at your head rather than into your eyes - do you think you're wearing too much hair in that wig that's flagging people's attention, is it time for a different more flattering style for you? And I think it's just fine when people are checking your hairline to either ignore it or to smile and shrug and say "I made all the payments and it's mine free and clear - it is my hair" with a big smile and then ask if they have any questions or tell them about alopecia or hand out a little card about it. I find that the more straightforward I am about my scrawny hair (and hair shedding all over my clothes and sometimes theirs) with people, the more comfy we all are.

PERCEPTION BY YOUR CHILDREN WHEN YOU GO OUT BALD IN PUBLIC

“How do you think my teenage kids and my seven year old feel about how I look? And what about their friends? Who wants to be the kids whose dad has no eyebrows? When my kids have anyone over the house, they have to make sure that I am not there without my wig and glasses. It is awkward and uncomfortable for everyone.”

“I have told my kids it is ok if they feel a little shame if their friends know. But i have told them i am not in the least embarassed. That i have done nothing wrong - didnt rob any banks (yet), was not hurtful to anyone, etc...”

One of the participants within our list server once confided how her 9 year old son was often embarrased when seen in public with his balding mother.

“While I don't go out without some kind of cover (scarf, turban, or wig) it still embarrasses him when I wear a scarf or turban. He tries to come up with excuses for me, like "She's trying to keep her hair wet (?)". Anyway, I know he's very sensitive about the whole thing and, though I haven't expressly promised I wouldn't go out without a wig, I do make an effort, particularly if I'm somewhere for him (School, Boy's Club, etc.). A few months ago, I took him to a support group meeting. (He doesn't have alopecia). It's amazing to me... my 14 year old daughter who is so VAIN, doesn't care. My son does. I don't know the best answer to this, except, I don't want my son to feel uncomfortable with his mom when we're in his environment.”

I do believe that instances such as these provide a wonderful opportunity to teach our kids the mature way to deal with life's problems. Tell them that you do not need an excuse for your baldness. You are not ashamed and you do not have to deny it. It is just a problem with your hair. People like you for who you are, not for your hair. Tell him or her that you understand what it is to feel embarrassed. Your own parents may have given you a lot of good material as a kid. Also tell him/her that if anybody did notice, have questions, or tease him, to come to you. You will gladly answer questions and talk with anybody. BOTH parents should sit with their children and tell them how proud they should be of their affected mother/father. If the parent feels comfortable with his/her condition then the problem is with the child. You can pray that this phase doesn't last but his/her being ashamed won't disappear immediately. Do not get angry. One of the ways to handle this is to create scenarios for the child where you transpose roles. Perhaps he/she should shave his head and wear a wig to see how uncomfortable it is - this one may back fire, he/she may feel it is so COOL to have his/her head shaved. Or you can appeal to him/her on the level of "what if it was you...your eye was missing and you had a false eye and I reacted with GOD!!! Don't forget your eye when you go out in public! Your going to embarrass me!" It is still hard to deal with the problem. It may bring you right back to your childhood when your own Mom had a hard time seeing you without a wig on. You can take your family members needs into consideration but sometimes you deserve to be selfish. The more you shed the wig the more you will begin to feel like your old self again, you just look different.

Just remember that while outward appearance is sometimes VERY important to teens and pre-teens, the real essence of being their parent goes way beyond what's visible. The lessons and guidance you continually provide, the example of compromise and cooperation, and the focus on the intangible values are what they'll look back on and draw from as they mature. It may help you to remember that they are children, immature, and they're striving to define their own values, outlooks, and (yes) prejudices. They look primarily to us as models to copy the parts they are comfortable with, and continually make choices (sometimes defying any logic or explanation).

PHOBIA TO PHOTOGRAPHS

“And pictures! I am not afraid of people taking them, I'm afraid of people looking at them afterwards. I see those pictures and think, ‘Everyone can see it's a wig!’ It's awful!”

“I have just gained weight along with alopecia. When I look in a mirror or see a picture, it doesn't look like me and I am not comfortable with picture taking. I resent when someone insists on taking a picture- especially if I am not prepared. How does one handle this situation? I would hope that the person taking the picture would respect my wishes, but I find that they do not. It is very disturbing to me.”

Many alopecia areata sufferers develop a fear of having their photographs taken. This fear often translates into an avoidant behavior on part of the patient, e.g., in many occassions they offer to be the photographer, this way they don't have to worry about being in the photos. The fear is based on a poor self-image and the belief that their appearance will be the object of ridicule by others. They feel embarassed and humilated by their baldness. This is true even for some patients wearing wigs. They feel unattractive, self-conscious and apologetic about wearing a wig. Sometimes they get fanatical in their efforts to stay slim and wear nice clothes- almost as if they are trying to "make up" for not having any hair... Their friends tell them that they have a pretty face and a nice figure, but all they can think about is not having any hair. Their baldness has completely ruined their self-esteem. The fact that they have had alopecia for a certain time, even years, doesn't mean that they have come to terms with it at all.

I get very sad when I look at women's magazines and see that about 95 % of the magazine is devoted to "looks" and the other 5% is about food. Losing weight, the right makeup, clothes, etc., --all with pictures of these perfect airbrushed creatures--can make us all crazy. The worst part is that we buy into it. These magazines emphasize prettiness. They deal primarily with techniques to make you look good. Beauty, on the other hand, is about being yourself. Most times prettiness can never be beautiful.

Once you accept the fact that you are bald, and being around all the same people as before, you will realize that not one of your friends or acquanitances really care about your hair at all, other than to the degree they are concerned about your reaction. It kind of hits you that it really isn't the people around you that have to be less superficial about your hair loss....YOU HAVE to be less superficial about your hair loss. You have to show some courage and character. YOU have to reinvent yourself....a little. You can find some related information in other sections of this document (e.g., self-image, psychological stages). In the meantime, just a thought from one of our members; "I too don't like the way I look in pictures and when I had my head shaved tried to avoid them. Then my wife mentioned that when she was 9 her mom died from Lupus and because of the way she looked she avoided having her picture taken. Now my wife doesn't have any pictures of her and really wishes she did even with effects of her disease."

PHOTOSENSITIVITY

“My little Casper head would burn in 3 minutes flat, so it stays covered unless I'm in total shade.”

Many of the patients with alopecia areata that I have counselled complain of adverse reactions to sunlight. Take the following story:

“At the moment, I confess that I am so discouraged by my own condition that I am really down. I went to Florida (I've posted several things about our trip). During the entire time that I was there, I wore clothing that covered my arms and torso. But by the time I got home, my arms were inflamed and purple. A clear reaction--but to what? The sun? At first I thought that it was that. But five days later, the reaction has spread to parts of my arms that weren't red at first and to parts of my torso that were under several layers of clothing. So now I wonder if it is an allergic reaction to the PABA that I had been taking to try to head off some of my sun sensitivity. I guess it is the accumulation of problems that is so discouraging. I could live with losing my hair and eyebrows and eyelashes, but to have my skin react to the sun to such a degree makes me wonder if I will have to spend the rest of my life indoors. And I love the beach and the outdoors. I feel like such a freak! The only good part of it is that my doctor gave me a brochure about clothing that is extremely light but protects thoroughly against the sun. It is expensive but I expect I will try it. I just wish that my joys of life weren't being chipped away a bit at a time. I have given up coffee, meat for the most part, desserts, and now sun. What next? Sex? God forbid.”

Light has a number of important beneficial and deleterious effects on the skin. Those individuals particularly predisposed to the effects of sunlight are said to suffer from photosensitivity. Although sunlight reaching the earth is composed of emissions in the ultraviolet (UV), visible, and infrared spectrum most photosensitivity phenomena are related to UV light.

The ultraviolet spectra has been arbitrarily divided into an A, B, and C portion. The UV/C spectra fails to reach the earth because it is absorbed by the ozone layer. Radiation B spectrum causes sunburn and can be screened by a pane of glass. The UV/A spectrum on the other hand, causes aging, tanning of the skin, and is responsible for most of the photosensitive reactions. A window glass that protects against sunburn will not protect against a photosensitivity reaction.

Clinicians usually divide photosensitive reaction into phototoxic and photo-allergic. Phototoxic reactions are immediate and produce redness and pain. The reaction resembles an exaggerated sunburn that peels after several days. Vesicles (blisters with a clear watery secretion) and exudation may also be present. An area of hyperpigmentation (darker skin) may remain in the affected area.

Photo-allergic reactions are delayed (often after a second or further exposure) and produce inflammatory/eczematous changes, itching, and a positive photopatch test. Photo-allergic reactions are most frequently induced by sunscreen components (PABA, PABA esters, and benzophenones), and fragance additives. The eruption is limited to sun-exposed areas. However, upon re-exposure to a challenge, the reaction time will shorten and distant flares may develop, i.e., distant sites not exposed to light may be involved. This phenomenon suggests an immune mechanism. Note: Benzocaine, a topical anesthetic agent used in sunburn preparations, is a PABA derivative. If you are sensitive to PABA you may also be reactive to benzocaine and related products (procaine, tetracaine).

Removing the offending chemical, local care of the skin (cool moist compresses), analgesics, and topical/systemic steroids are the prefered methods of treatment. Patients that exhibit photosensitivity have been advised to avoid exccessive exposure to sunlight. Wear clothing with tightly woven fabric (all colors work well), wide-brim hats (specially when working in the garden), long sleeves, and hats. Consider using suncreens except in those cases where the active ingredient is the inciting allergen.

PROTECTION FOR THE SCALP

“Right after I lost my hair I went to Florida,...I looked like a giant match head!”

“You wanna talk sunburns? I can talk sunburns. Try being AU, having vitiligo everywhere, too (no skin pigment, so no tanning ever) and not wearing a wig.”

“What I do these days is bring an REI soft hiking cap (cloth, washable, and very comfortable) when I am out at the beach or playing tennis or at a picnic. With this and sunblock 25 I can balance the amount of sun I get. Years ago when I wore a wig this was much more difficult. My face would always be more tan than my head so I would have a large white monks circle. I never could get enough sun to match.”

“I think you guys should just start a new fad...we will call it sun tatoos. What about wearing a straw hat of some sort and you will have itty bitty little tan holes....:)”

Changing seasons bring different problems to people with shaved heads. During winter they may suffer from dryness of the scalp while summers brings the prospect of a sunburn. The loss of hair in alopecia areata is accompanied by a loss of those skin appendages attached to the hair follicle, e.g., sweat glands. The end result is a reduced ability to perspire and a higher likelihood of sunburn during the summer. One way to avoid the sunburn, blisters, and oozing of the summer months is to use a sun screen lotion. One of our members was a red-head, but now she is only a red-head when she forgets her sun screen. Also get a hat to keep the sun off during peak hours or prolonged periods outdoors. As for winter months and dry scalp, use a moisturizer. Some moisturizers include additional chemicals, e.g., fragances, to which you may prove allergic. You will probably end up by trying several moisturizers before settling on a favorite one. Another positive aspect about moisturizers, besides the soothing of the skin, is the fact that it may help healing skin irritated by shaving. One of our members has recommended a product made by Aramis called New West gel. It is a menthol based blue/clear gel that not only feels great, but also keeps your skin moisturized despite constant shaving. You may also consider buying a cotton cap for sleeping in (specially during the winter), which is also ideal for when you step out of the shower- it keeps yor head warm as you dry yourself. You can purchase one from Hairline International at:

Lyons Court
1668 High Street KNOWLE
West Midlands
B93 OLY
United Kingdom

A cotton sleep cap made of natural fiber items ("the Comfort Cap") can be obtained from:

Wittmann Textiles
11570 S.E. Dixie Highway
P.O. Box 1066
Hobe Sound, FL  33475-1066

As of one year ago they were still paying for the shipping costs. They advertise that they do not rent or sell their mailing lists. Their cap will stretch out after some months, but can be rolled a bit tighter, or used as a first cap on those cold 2-cap nights. When worn out, it makes a nice car waxer. Prices as of one year ago were 6.30/each -- 3 for 13.80 -- 6 for 23.70. At that last, with the shipping paid, they were under 4 dollars each; quite a nice price I thought. The caps are kind of made like those wool watch caps, only they are soft cotton, not bulky wool. There is no elastic, the fit relies on the stretch of the cotton fabric, which is of the thickness of, say, a T-shirt.

Other alternatives include a Mambosok that can be obtained from:

The Ski Hanger
Park City Ski Area Plaza
PO Box 782
Park City, UT 84060
(801)649-4169
Jill Sitting (Owner)

Just in Time, Inc, PO Box 27693, Philadelphia, PA 19118 (215)247-8777 sells assorted cotton hats and turbans that look decent. As of 1994 they sold for about $22 and they have ties/scarves with them to look jazzier.

In the North, you may be lucky and obtain a long polar fleece cap, similar to the one snowboarders wear. They are really soft , so no irritation to the head either. They are so light and warm, that they should make wigs from them. You can find them in the Land's End catalogue. "Turtle fur" caps can be bought at outdoor sports stores or at any ski equipment shop. They are made from this VERY soft synthetic fabric. It is plush and thick, along the lines of polar fleece, but even softer. Terrycloth caps (kinda like a turban) can be worn at night and are even nice around the pool or beach.

REJECTION BECAUSE OF YOUR APPEARANCE?

“We are each responsible for our own actions and feelings. How we look at others, I think, is indicative at how we look at ourselves. About two years ago, I was in the beginnings of a relationship with a man who knew about my AU, and he told me that it didn't bother him at all. Unfortunately, I was still in the denial stage, and it bothered *ME*, so I found myself finding faults with him so that *I* wouldn't be the one hurt/dumped (or so I thought) by him. Turns out, after years of thinking about it, that the faults I found in him were the same faults I saw in myself. I had projected them on to him because it was "easier" to deal with them that way.”

“I'm 17 and a junior in high school. I don't wear a wig, and go around with nothing on my head, I'm dealing with this really well, but there's one thing that bothers me. Who wants to date a bald girl, I mean first thing they see, no hair. I know that you will all say, there's lots of guys out there, you'll only get the best, because the loosers will run before you think about them. Well I called this guy I liked, and I said hi, and he's like who's this, and I said my name, and he hung up. He knows who I am too, because everyone in the school knows me... probably as the bald-girl. But I don't see how your supposed to get to know a guy, so well, that having no hair doesn't matter. I mean I can't imagine a 17 year old guy, that would date a bald girl. Well... I take that back, somone who's got alopecia too wouldn't care. I have this feeling that everyone's scared of being the guy-who's-going-out-with-the-bald-girl. I just... just want to know it's possible... and how to do it...”

One difficult moment for one of our members was in the "Phantom of the Opera". The Phantom of course is supposed to represent ugliness of the worst sort--and as part of his costume his head is bald with tufts of hair. Alopecia areata may make your head look a bit like that. Remember that at one time the Phantom also had to uncover his head to his beloved with less than satisfactory results. Well, even if you prefer wearing a wig, there will be situations in life when you may have to uncover yourself willingly or unwillingly. In one extreme you may be in labor near delivery, in another extreme your hair may be caressed by a loved one. You are limited in some activities, and some activities are simply just no fun while wearing a wig, if you get my drift. Then... there's always the problem of "how do I tell this person that this is not my own hair?" Be honest and keep them informed about your condition- after all you may appear to them all the more interesting.

Many people develop a fear of rejection that may be unfounded. Going to a class reunion may wake up unpleasant memories of your formative years. In the majority of cases the people that you fear died a long time ago. Just as you are not the adolescent who lived back then, the adolescents that they were are long gone, replaced by adults who have been seasoned by life experiences. If anybody asks you about your wig or baldness, just be straight, short, to the point and neutral about hair loss. "While my hair never grew back, *I* have grown" and go tell them about your life now. You will be surprised by the maturity of the people.

Rejection may provide an opportunity for some introspective analysis. How long were you dating this person? How quickly did you moved romantically in this relationship vs growing the friendship first as the foundation? How would you feel about talking with this person now to get feedback from his/her angle as to what happened? I think it could be helpful in terms of seeing who that person is, whether you were acturately assessing what was happening and if both of you were in sync at one point what shifted. You need more information. It may be that your ex-partner has a pattern of fast closeness then disengagement (in which case we learn from this to do our homework upfront by gathering history with the right questions), it may be that he/she was not perceiving the relationship as building toward what you may have wanted from him/her, it may be that he was a lightweight about hair (in which case he could be saving himself some money by dating a wig and eliminating the middle person, it could be your own discomfort (if existant) he/she may have been picking up on, it could be a 101 other things. Sounds like this is a good opportunity to be assertively forthright with this person, look him/her straight in the eyes and straight on tell him/her you're confused about what happened and would like to clarify some things. A nice honest caring human moment between two human beings who may wind up good friends, which afterall is the foundation for the best of relationships.

Rejection may occasionaly come from close quarters. You may have accepted your fate, but your spouse may have problems with your condition. If the people who say they love you can't back you up, then who can you turn to? Why is anyone with alopecia made to feel it is somehow their fault? You certainly didn't ask to lose your hair. If it was up to you, your hair would be your own, long, and flowing, just like the commercials say it should be!

Your spouse may be scared. This is something they have no control over, and they don't know how to deal with it. It's up to you to make them understand your feelings about it. Otherwise, your lives are going to be miserable...and you, your children, and your husband don't deserve that.

It may sound cruel but some spouses may be what I call "external" persons. They are more concerned about how people look than what makes them tick. This problem (alopecia) becomes internalized as their own problem. They are embarrased not for you but for themselves. Remember and be thankful for those people that accept you for whom you are (hair or no hair) because they tend to be morally stronger. "External" people carry a lifestyle that breeds on insecurities. Talk to your spouse. Remind them that you wish you could have your hair back, you wish that you could win the lottery- but check out the odds on that. Provide them with a reality check. Ask them whether their expections are in keeping with reality.

In some occasions rejection may not necessarily be due to the alopecia. Some of our participants have broken up their relationships including marriages since before they had hair loss. If they had alopecia at the time, then they would have probably blamed it on the alopecia. Probably their mates would not had stayed on the relationship if they had alopecia, but then it would just have been an excuse.

When you are in love, you may not see the signs that were possibly there even before you left. What came as a surprise to you may have been building for awhile. Your alopecia may have played a small, if any, part in your friend's change of heart. That being said, if you are obsessed with your condition, you will not be the most pleasant companion to be with. As hard as it is on our psyches to get past an obvious problem, the less you pay attention to your AA, the less other people will as well. The only people who really would care about the fact that you are bald/balding due to AA are the ones who would NOT make good life mates to begin with. Surely you wouldn't want a mate who was so superficial as to change when things weren't going perfectly? What if you were in a disfiguring accident, or suffered a stroke, or got cancer that caused a limb to be amputated? If BALDING turned off that person, why in the world would they stick around for a really BIG problem? I don't know about you, but I'm better off without fair-weather friends, especially ones that I'm really emotionally attached to.

If being physically "perfect" is part of the criteria for maintaining a relationship, there are a lot of beautiful people out there who get dumped for no apparent reason. Everyone gets dumped on, some of us multiple times! I sometimes wish I could tell teenagers not to sweat the broken hearts because they'll probably have a lot of them before they find their "true love", but I'm not sure the knowledge would help. None the less, "losing at love" is something that happens to most of us. I doubt there is a person over 30 on this list server that can't tell you at least one sob story about being dumped or deserted. My list of sob stories is embarrassingly long. Most of them I consider funny now, in retrospect, the others I look back on and think, "Thank you, God, for getting me out of THAT relationship intact!" I have few regrets when I look back at the people whom I thought loved me and ultimately left.

For our younger adults remember that you have a lot of life to experience yet. Your odds of meeting someone who will fall madly in love with you are very good. You must stay open to possibilities, however, and don't worry about finding your life companion. Make sure that you are as open in your evaluation of women/men as you expect them to be about you. I don't mean you should settle for someone you don't love, but remember that the "less than physically perfect" person may actually be a better life companion than the one who all the men/women are after. Just as power corrupts, often beauty does as well. I think it is very hard for really beautiful people to maintain good perspective on what is important in life. It's not impossible, there are people who are every bit as beautiful on the inside as on the outside, but it seems they work harder to keep values in proper order.

If after awhile you don't find yourself feeling better emotionally, you may want to look at getting some help for depression. You know it is a clinical problem, and is not a sort of character weakness. With help, you can get back into life and dealing with a knotty problem like AA with an optimistic attitude and a readiness to attack the future instead of dwelling on the past. Just know you can write your friends here at any time. We understand your pain and depression. We've all been there to one degree or another. Don't ever think you are the only one who has ever felt this way, because it is just not true. Whether we've lost a loved one because of AA or because they found another lover, the pain is the same. The first thing you do is blame yourself instead of blaming the person who really caused the pain. We cannot make ourselves responsible for what someone else does. We can feel sorrow over their leaving, but don't feel that they would have stayed "if only I had hair/ were different/ had money/ were more attractive/ could stand on my head longer/ had a fancier car/etc., etc., etc." The person would probably have left, regardless. In other words, YOU'RE OK, the person who left changed or was not the person you thought they were.

On the practical side of dating is, when to tell them about your condition? Some of our members go out first. If it looks like something may develop, then in a nonchalant way, show them the spots and tell them what you know about the condition and let them decide what the next step will be. Keeping secrets is an increadible burden and one you don't need to carry. If the person is so turned off by the AA to bailout on you, just figure that they must have a lot more problems than you have and just can't take on anymore. A polite way of saying that they are too shallow and not worth any more effort. The usual reaction after giving them the news is to pull away at first, and then ask for more questions if he/she is still interested. Remember that anytime people are exposed to something new for the first time they are apprehensive. You might react the same way if the circumstances were reversed! Give him/her some time if YOU are interested.

The following is an inspirational story from our of our members:

“Last June, I was separated and divorced. Despite this, I went to the NAAF conference in July (alone), attended several group workshops discussing my condition, and mustered the courage to go wigless.

“This brought about new changes in my newly-single life. I used to conceal my hairloss until I decided it was worth the risk of telling the woman I was dating. Now, though, everything's out in the open, so to speak. My first date after being totally bare made me very nervous. But I quickly learned that the hair issue was only as big as I let it be. Sure, there were some airbrains that might think less of me because of my shiny head; but do I need that kind of person in my life? Eventually, their hair will wither, and fall out, too. I simply am more advanced than them!

“I met my new wife on a blind date. We had talked several times on the phone and were arranging a dinner meeting, when she asked what I looked like, so she could recognize me. My heart raced in panic. I decided to be honest and tell her before I was emotionally invested in the relationship.

“I explained that she would have absolutely no trouble identifying me. This got her curiosity up, so I had to explain further, saying, "I am bald... completely bald... Hairless."

“Matter-of-factly, she said, "Oh, well I've dated lots of bald men... actually, I prefer them."

“My heart never stopped racing from that point on. Our philosophies, and ideas on many things match so well that I married the lady shortly thereafter."

“So, you don't have to be attractive to everybody...just to one!"

BRAVO. The point is that people with AA/AT/AU have to "settle" for more, not less in a mate. The person who we end up with that accepts our condition and all the other aspects of who we are, is the type of person I WOULD want to be committed to. Even if I didn't have AA, I would not want to end up with someone that would find a relationship null and void over hair, or another problem, as time went by. So to keep things in perspective, yes, those of us with AA/AT/AU may not be right for some people out there, but in my mind we end up with a better person, not less of a person, who accepts us, regardless of what current "imperfection" we have. Afterall what is love? A friend of ours was married for 20 years when he lost all of his hair. Now his wife tells him she had never noticed how cute his ears were.

SEBACEOUS GLAND HYPERPLASIA

“Do many of you feel these little bumps on the scalp where a spot appears? They feel like little pimples on the scalp...”

The "pimples" may represent an overgrowth of sebaceous glands. The overgrowth of sebaceous glands occur surrounding hair follicles in the face or in the bald scalp. Only middle age and older adults have them. The fact that they appear in exposed area late in life has made some people believe that they are somehow related to sun exposure. Other people believe in a genetic component (the lesions are seen in Celts and people from northern Euoropean extraction). There is really no cure for the affliction. You can destroy them but the scar will be more noticeable than the lesion. Some physicians have attempted to treat the condition with Isotretinoin (Accutane). Accutane is an oral reinoid that inhibits sebum excretion, the growth of P. acnes, and acute inflammatory processes. It is prescribed for cases of sever acne. Accutane can be given orally to reduce the size of the sebaceous "pimples" but they soon regain their original size after stopping the medication. (See also under Miscellaneous Questions.)

SELF IMAGE

“I had very long hair for my first 20 years, and when I cut it off, many people did not recognize me... I felt as though I had lost my 'trademark', something that defined me... Particularly being a woman and having this affliction, makes it all the more socially difficult. But what you say is true, as time goes on, I obsess 'differently', and can prepare myself more than before.”

“I have, for most of my life, allowed other people to influence the way I feel about myself. This has resulted in a low self-esteem and a severe lack of self-confidence, not to mention the heartache and pain I have gone through.”

“Being bald happened TO me, not vice-versa. I don't think it's right to let my image be dictated to me by my 'disease'.”

“I remember when I was little, that due to lack of knowledge on the part of my Dermatologist, he had me putting this "cream" of some type on my head, and then having my head wrapped in saran-wrap. I don't even know where he was going with that one. I was too young to care/and or understand. All I knew was that it made me more different than everyone else. Then I wore scarves when my hair was playing in/out roulette. That always went over real well in school!”

“We have the obstacle of having to look at an "imperfect" image in the mirror every morning. The challenge is to remember that the "imperfect" is really beautiful, wonderful, smart, and on and on.

“I wake up every morning hoping so deeply that I would see me again and then wala!! I am not there and there is this freakish looking thing in the mirror. I have wanted so bad to wake up from this nightmare and I can't. I really never realized how much my hair meant to me. I was so vain for so many years.”

“As my hair grows back, the doughnut stand man begins to bother me again. I'm ashamed to say that for the first time ever, I relish this attention. It's so different from the nervous stares I suffered as a bald woman. It's been embarrassing to learn that it hasn't taken much to disturb my pleasure in my body, to make me look down in shame when an aquaintance passes me on the street, to hesitate going out because I feel ugly, to choose clothes that render me invisible. Not much at all. A haircut.” [Quote from the September 1998 issue of Mademoiselle]

“During last Sunday's spiritual service, we had a guest that was talking about funeral preparations and making living wills, etc. When my minister came back in front of the room, he mentioned that he noticed that many people looked uncomfortable about thinking about death and were probably wondering "what does this have to do with spirituality?" The discussion that followed pointed out that facing our fears has everything to do with our spiritual growth. We were then asked to meditate on that... to imagine our worst fears, in order to be comfortable with them. In the next few minutes, all I could think about was how difficult it would be for me to face the entire world with my bare head... no scarves, no wigs, just me and my shiny head. No defenses from stares or comments or gossiping. I realized that I don't fear death, but I do fear my own baldness.

“I have always felt that it is my personal choice to wear wigs or scarves. I choose how I want others to see me. But as soon as I realize that the alternative is based on a fear, I have to question my choice. I can easily expose my baldness to my family and close friends, but I have a fear of how people will react to it if they don't know me well. I base this fear partly on a memory of my own reaction to seeing a bald woman before I went bald (she actually had some hair in spots and was probably alopecia). I remember being totally dumbstruck and couldn't take my eyes off of her. I actually hid myself so I could watch her without her knowing. I recall that I saw her as a social rebel. I couldn't understand how anyone could choose to be seen like that. Years later, the same fate visited me... an ironic twist of fate.”

One of our members once went to try a new wig at a salesperson booth at the NAAF congress. After trying it on, she felt strange. Her head started to sweat and had wispy things in her line of vision. It also felt very heavy. She went to the mirror and it looked good, but it didn't look like her. The woman that she once knew no longer was looking back at her. Instead, an unfamiliar almost foreign looking face eerily stared back. She blinked twice, hoping that this face would become clearer and more focused. Only during the last few years had her own wigless reflection become less foggy. Suddenly, she started laughing, a hysterical, nervous, scary laugh. She then started crying, but didn't know why. She caught a glimpse of what it would be like to look "normal," and so much of her identity was based on being "different". It all brought back those old questions about what her life would have been like if she had had hair this whole time- something she hadn't thought about in a long time. That moment provided her with an inkling of what it would be like to have a full head of hair. To then look in the mirror and see yourself bald and not recognize yourself. She had always thought that she'd gotten past that whole self image hangup, because she was able to live a full, happy, normal life without hair or a wig. But in fact (and it was a very painful and surprising discovery), she had rolled just as much of herself into how she looks as anybody else.

Bodily appearance is an important component of our identity. Self-esteem will inevitably be affected, more so in those of us who have relied vigorously on our hair ("crowning glory") to feel worthwhile. Loosing your hair implies a long mourning process. For some it may involve distancing themselves emotionally and physically from others. Discovering your own possibilities and inner qualities will reawaken many feelings that have long remained stiffled. It is not uncommon to realize that you have gained acceptance at the same time that you are crying. Talking to others may take away some of the frustration and anger. This is why you should talk about it more. The more comfortable you become with the condition, the more you will make a difference on how the rest of the world sees you.

Sometime ago I expressed an idea that people afflicted with AA are very special. Overall they are very intelligent and children, espcially, tend to be very mature for their age. This creates a challenge because alopecia areata is a chronic rather than a reactive condition. There is a lot of "downtime" for patients suffering from the condition that allows them to analyze and judge their performance. The more you demand of yourself the easier it is to become frustrated. It's an uphill battle everyday. You may like your looks but still feel a need to be perfect in every other way in order to make up for your lack of hair. You need to be skinny. You need to get enough sleep so that the undereye bags go away. You need to look like a model.

I have a friend, a college professor with AU, who is able to enumerate all of the achievements of his distinguished career. Yet he sabotages himself by enumerating with equal facility all of the negative experiences he has endured ever since elementary school. Right now his work is suffering because of negative thinking. He occasionally experiences a "paralysis by overanalysis". The idea of hair loss had acquired a repetitive, intrusive quality in his whole life that overflowed into his self-image. It was what some people may call magical thinking or a self-fulfilling prophesy. In many cases he doomed himself into failure before his first attempt.

The person that I am talking about is a highly educated individual. He has more than an elementary knowledge about coping skills but failed to realize that coping mechanisms is a game played between the ears. They really don't work in isolation to improve your self-image, to gain confidence or control of your life.

With my friend I had to make it clear why he had fun at work. Superior performance ellicits positive thoughts and viceversa. I had to teach him to focus on the tasks at hand and to recognize that there are many things over which we have no control. Sir William Osler oration on "One Day at a Time" was markedly appropriate to his case.

It soon became evident that, in the case of my friend, the self-image problem was embedded within the emotion of fear. This was most debilitating for him. His overactive and anlytical mind was too cluttered with information. Enabling him to relax, allowed him to stay focused, achieve his goals and improve his self-image. Now, every time he gets anxious he practices controlled breathing. He concentrates on maintaining a slow rhythmic breathing and occasionally repeats to himself words like "relax". When his muscles are tight he also finds a quiet room and contracts different muscle goups of his body for some 10 seconds. He then notices the difference between a tight and a relaxed muscle. Hey, it has worked for him, maybe it can work for others. Remember, it is OK to hate alopecia and all of the problems associated with it. Just don't hate yourself.

We worry about how we look because of our alopecia, the next person looks and worries because of skin, shape on nose, or chin. Either they are too skinny, too heavy, etc. The woman who played Scarlet O'Hara (Vivian Leigh--a renowned beauty) was so appalled by the shape of her EAR LOBES that she was obsessed with how ugly she was. Nothing that anyone said to her made a difference. She was tormented by her ugliness. People need to catch on that everyone is worried about their own selves. Everyone. That is how society has taught us to judge. So in actuality the playing ground is leveled. I repeat, there is no perfect person, though somebody oughta tell that to Michael Jackson!

SEPARATION ANXIETY

“I was chosen in my master degree class as "the one most likely to die by choking on a vitamin."”

Separation anxiety is a common phenomenon once you decide to stop treatment or break away with your physician (i.e., stop going for medical visits). Sometimes at this stage, the anxiety is manifested by multiple visits to other health care facilities for ailments apparently unrelated to the hair loss. Besides support and caring this may be another reason why some of our members have joined the list server. Arguably, treatments can be seen as ritualistic, and we all take comfort from rituals (especially the ones we think are helpful). Any person facing a chronic condition or even loss of an appendage must travel a torturous psychological pathway. Experiencing grief, dejection, isolation is a natural phenomenon. However, overcoming the same is what makes us better and stronger.

My comments are not meant to mean that pursuing medical treatment indicates a mental disorder or is erroneus. I think that treatment is indicated especially early on in the disorder, and for those persons having a few patches, no allergies, and no evidence of systemic involvement. I also believe that there is an echelon in terms of which treatment should come first- going gradually from the less invasive to the more invasive. I particularly shun away from DPCP and other sensitizers because they may be too dangerous. Treatment options should be individualized and take into account the type of alopecia, stage of the illness, potential efficacy of the therapy, and even the wish of the patient.

However, usually you will know if a medication is going to work within the first few weeks or even months of treatment. Still even in the face of failure, some patients are proactive in searching for a cure (or their desire to have their "old self" back). It is only after repeated attempts and failures at therapeutic interventions that a patient may be discouraged enough to quit trying to grow hair. I think that there is a time and place to jump off the hope wagon, but there is no need to be pushed out of it. So how about building coping mechanisms for when the time is right?

A few of the patients that I have talked to at this stage of separation anxiety are so preoccupied as to whether they are doing the right thing, that it leads to social problems or, at least, a temporary diminution of their assertive skills. They feel at a loss of their personal autonomy and have intrusive immature thoughts (e.g., will I miss on a medical break through and a cure on alopecia if I stop treatment?) I think that as they continue medical treatment, the patient doesn't have to face deeper thoughts and feelings. In a sense prolonged and ineffectual medical therapy is trying to procrastinate on acceptance.

Again, I am not stating that pursuing medical intervention is wrong. What I am saying is that there is a time to break away from therapy if the same has proven ineffective and has serious side effects. So how to make a break with therapy in a positive manner? How do you avoid or minimize the separation anxiety? One way would be to draw out a contract with yourself stating the reasons why breaking away is necessary. This would be an example:

I, _____________________, hereby promise to myself that I will stop pursuing dangerous interventions for my alopecia.

My reasons for exercising this right to stop medical interventions are:

_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________
_________________________________________________________________________

Steps that I will take to achieve this "withdrawal" are:

________________________________________________________________________
________________________________________________________________________
________________________________________________________________________

Signed _____________________________ Date ________________

It would be a good idea to provide for some "comebacks" to frequently asked excuses for non-stoppping. A good one would be "There is absolutely nothing so valuable about hair that health should ever take a backseat to it."

SEX AND SELF-WORTH

“...Our men go off to work every day where women have "real" hair and eyelashes and we wonder if they miss that on us.”

“I think of myself sleeping in bed and all I can think about is that I must look so weird with my eyes closed and my head all bald and everything. Even though I know that sensuality and sexuality have nothing to do with one's outer appearence, the thought nevertheless scrares me. Also I feel like I am a woman trapped in a little girls body.”

I was talking the other day with a young lady who had been AU for the last 10 years. She was questioning herself about her choice of boyfriends. Her first boyfriend dumped her at the time she first lost her hair. Ever since, she has been involved in "abusive" relationships with other men. Now she was asking herself, why did she have such lousy taste in men? It appeared as if her first relationship had traumatized her (both physically and emotionally) and she needed some type of desensitization. An interpretative statement soon overpowered my mind. This young lady first learned to love from an abusive relationship, maybe she was trying to recreate the few things she had experienced, the good with unfortunately the bad. Anyway, I never said what I thought and she kept on talking. All of a sudden, she stared at me and said, "I know that I usually do it because I am a sexual being!". It seemed that the explanation (different from mine) made sense to her, that she was pleased with her interpretation, and that somehow it alleviated her pain. It was probably best that I kept my mouth shut. Sometimes it is a crap shoot how much of yourself you want to put into a conversation. Hearing her was important to me and somehow gave me new insights as to her condition. Perhaps she was hoping to get my opinion and then supplied her own. I guess forewarned is forearmed and she does appear to know just what she is doing. It reminds me of a dream class I took. The instructor said that the best person to interpret the dream is the dreamer. That may be true of our lives if we are brave enough to be honest.

I think it was quite a profound observation on her part that she was a sexual being. Some people may construe this statement as saying that you have to make sacrifices in order to have sex. Our sexual years are limited and it is nice to enjoy the food while we still have the appetite. Perhaps these relationships were the best ones that had come her way. I had another patient who told me from experience, "Between husbands I had a few relationships that I am not proud of. It seemed at the time that there were not a lot of opportunities for fun in my life. I loved sex and did not think I should have to do without along with everything else I was doing without." I hope you remember "Looking for Mr. Goodbar", where the protagonist did not want to miss on the excitement of good sex... in the end it costs her life. In retrospect, the romantic relationship may have moved too rapidly. Yes, there is a definite dirth of available men which explains why it happens and makes it really easy to compromise on those traits to look for in a mate. It would seem that some alopeciacs do grab the first partner available, but random chance has never been in their favor. You would think they are capable of learning that lesson!

Some men may feel relief by blaming sexuality for a whole host of other problems; neediness, desperation for self-worth increase, ego feeding. Women on the other hand have to make sacrifices in order to have sex. Not a long time ago, women were taught to feel guilty for having any sexual feelings at all. Many young people out there today were raised by mothers who thought this way. Women with a sex appetite can easily falter at being a master of their own faith, after all, there are no male brothels that I know of. At the end you may pay a high emotional price to establish a sexual relationship and looking back, you can be extremely hard on yourself. It is true that a high self-esteem can combat this feeling somewhat but other factors do seem to play a role. In the end, as long as you can get past your hair loss, accept yourself for who you are, and project that to others, chances are, others will see the beauty in you. It isn't so important that we are at our destination yet, so much as heading in the right direction. I think that through trial and error you discover what is most important to yourself.

Some victims of abuse have developed maladaptive attributions that revolve around their self-esteem. Helplessness is usually the failure of not having adequate coping strategies. Be cognizant that a lower self-esteem leads to not rejecting abusive relationships. Focus on the positive things in your life and base your self-worth on those. Remember that you did not cause the abuse, you have just failed to stop it. In other words, you were not responsible for the abuse beginning, you are only responsible for ending the abuse. Although you should partake in some self-blame for an abusive relationship, realize that the reason why it happened is something that can be changed (e.g., maybe your partner has psychological/emotional problems).

TV SHOWS

Prayer: “Lord give me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.”

“One day my children (then ages 3 & 4 )and I turned on the T.V. just as a new movie was begining called "The Witches" staring Angelica Houston. I had know idea what the movie was about, but there was no question once they heard the name of it that they wanted to watch it. They love hearing stories about witches. For those of you who have not seen the movie it's about a group of women who get together for a charity conference at a Resort Hotel. When in fact they are actually all witches, who get together for a meeting with the Grand High Witch. She is going to provide them all with a special potion, that when given to children will make them turn into mice! As the story unravels, all these ordinary looking women are sitting down at this conference and the Grand High Witch tells them that the doors have been locked to the conference room and it is now safe and you can now remove your wigs! The whole room full of women remove there wigs. Immediatly, my two little ones with eyes as big as saucers and mouths wide open slowly turn and look at me. With the weirdest look on there little faces. At first I just looked at them, like what are you looking at me like that for.....Then I realized, I think for a moment, they pondered the thought that maybe Mom was a witch! I started laughing so hard that I was crying...and at the same time trying to let them know that Mom wasn't a witch. Forcing myself, I regained my composure and asked them if they thought because I had know hair like the those women on the T.V. if I was a witch. They said, No your not a witch.............are you MOM? I said No, your Mom's not a witch...I'm just a Mom without hair. But then of course my husband had to put his two cents in and softly mutters, "sometimes, you are!"”

“I was renting a video last week and they had posters of Arnold S as Mr. Freeze, a villain in one of the Batman movies. Freeze appears to be Au, or at least AT, plus he has a light bluish tint to his skin. The poster is a bigger-than-life shot of him from the chest up and is dominated by his beautifully hairless face. I am going to frame it and put it up on the wall behind me in my office. I am debating whether to label it "Dad" - that would certainly give people something to think about.”

There have been many TV episodes portraying bald people as unattractive and making fun of them. The shows don't portray baldness as another look- not unlike that of a blonde, brunette, etc. Rather than a manageable preference in a successful, worthwhile and normal individual, the comedians make this an object of ridicule. It is quite common for ignorant people to make fun of what they don't understand. As an example, in an episode of Friends, a woman shaves her head and is no longer considered beautiful. There may be a difference when someone shaves their hair for no apparent reason versus someone who lost theirs from a medical condition. In our case, the patchy bald spots can't be considered a "look". Still, in both instances the person is the same before and after going bald. Some TV shows send the wrong message by mingling pathos with publicity ratings. Just because a show is meant to be a comedy that is no excuse for ignorance and impudence. While the world at large is not always a good place for a person to uncover, it should provide many heavens where they can and should be regarded as attractive, -and our homes should be one of them. TV shows invade your privacy and complicate your feelings of being safe and accepted without hair.

TV shows have a powerful influence on the attitudes of young people. Fortunately the condition (alopecia areata) itself may make you a more mature and understanding individual. You already know that a succesful relationship is based on more than just physical attraction. We are all at different stages on the torturous psychological pathway towards acceptance. Some days we are able to cope better than other days. You do understand that there is a difference between justified indignation and feeling second best to trashy comedy. Acceptance necessitates pride. Constantly lamenting about negative situational comedy shows will make you an object of pity. Remember that the last thing we need to concern ourselves with are people who base their opinions and values on TV shows. However, when judging the quality and content of TV shows, we need to be sensitive to those of our members that are hurting with hair loss. In this regard, I would rather act on my impulse and get my feelings to the open rather than to procrastinate and lament on society'e cruel joke on us. If the episode bothered you then write a letter to the TV network and to the sponsors of the show. We need to educate society so that they realize that one person's joke is another person's life. If they don't understand the point, then, they are the ones with the affliction, not us. Writing to the producers of a TV show is not fanaticism or ignorance regarding things that can't be changed. TV producers do place more value on the "lone complaint" than we believe. When somebody bothers to voice an opinion, they interpret it as representative of X percentage of viewers rather than making just one little "tick mark" in the plus or minus column. Tell the TV producers that alopecia areata is a disease of sort, it is not something that we chose, it is something that happened to us. Tell them that we can, however, choose the TV programs that we watch and that next time, we will flip the channel to something better. I personally think that TV is garbage anyway.

TRAVELING

An interesting problem if you wear wigs is what to do while traveling? Do you carry a wig stand with your luggage? Some people avoid foam head wigstands because they are cumbersome. Hotel lamps, bedposts, etc are all substitutes, but some are dangerous (don't turn on the lamp!). Some of our members check theirs through for fear of being wrestled to the ground when passing through security. No doubt, the people who scan luggage take a look inside the suitcase. On occasion their reaction may provide you with a chuckle as they scan your suitcase.

As an alternative to the uni-piece wig stand there are now plastic and metal models that break apart and lay flat for packing. They are two pieces of flat plastic or metal that are notched in the top to fit together, one inside the other. They stand up and hold a wig in place well for ventilation after washing, too!

VITILIGO

A common depigmenting disorder that affects approximately 1% to 2% of the general population with an equal racial distribution. Twenty five to 30 percent of patients have a family history for the condition and over half of the cases of vitiligo begin before 20 years of age. Vitiligo is due to the loss of cells that produce pigment for the skin (melanocytes). Antibodies to pigmented cells are found in the serum of a majority of patients with vitiligo. Affected areas are well circumscribed and favor sun exposed locations. Although the white spots are usually asymptomatic some may be surrounded by an inflammatory margin. Hair in the hypopigmented patches may themselves turn white. Generalized vitiligo is frequently associated with other autoimmune disorders such as diabetes, thyroid disorders, pernicious anemia, and alopecia areata. Treatment thus far has been unsatisfactory. Cosmetics offer the simplest avenue but other interventions include the use of steroids, PUVA therapy (ingestion of a chemical compound followed by ultraviolet radiation), and the complete and irreversible depigmentation of the skin. One practical point to remember is that vitiligo patches burn easily when exposed to the sun. Use cosmetics or sunscreens when working outside the house.

WEIGHT GAIN

“Anyone else, during the hairloss and low self-esteem phase, eat at least one cookie for each hair that fell out?”

Alopecia is indeed a pervasive disease. It effects our lives in more ways than we care to imagine. Something as simple as exercising (as I sweat my wig will get dirty and smell) or mowing the lawn (I just washed my hair now it will get dirty) can be a dilemma.

Since some of our participants have lived with this "problem" for so long they are not consciously aware of many of the things that they do or don't do because they have no hair. Although for some weight gain may be a side effect of their medications (steroids) for others eating may be a type of self-medication. Weight gain can serve as a way to reaffirm our beliefs of being "unattractive" and serve as a self-fulfilling prophecy for persons with alopecia. Additionally weight gain has traditionally been a way for people who have been "hurt" to distance themselves from others, e.g., you see weight gain in individuals who have been abused. Although I am not comparing alopecia in any way with abuse, we have also experienced deep feelings of hurt, anger, loss, and misunderstanding.

WHITE HAIRS

White hairs are a normal sign of ageing. Early greying of the hair has been observed in premature aging conditions (e.g., Werner's syndrome, progeria), and in autoimmune conditions such as alopecia areata, pernicious anemia, vitiligo, thyroid disorders, and Addison's disease.

The presence of white hairs in alopecia areata has always been intriguing. Some people believe that this is a sign that the immunological reaction observed at the base of the hair follicle in patients with alopecia areata is due to an attack on the cells that provide pigmentation to the hair (melanocytes) or that they are innocent by-standers to the inflammatory reaction there. This may also explain why other cells surrounding the hair follicle are also affected, including those found in sweat glands, sebaceous glands, blood vessels, skin cells (keratinocytes) etc. Regardless, it has been observed that some alopecia areata patients have turned practically all of their hairs white overnight (the black hairs may have fallen and only the white ones remain). According to some authors this overnight graying of hairs in patients with alopecia areata happens during severe bouts of the illness or during periods of severe stress.

During periods of regrowth a white fuzz may be seen. During a lengthy process the white fuzz may turn thicker and aquire a normal coloration. In some cases it may remain white giving the person streaks of white hair intermixed with hair of normal coloration. Some people have found the streaks of white hair "distinguished" and prefer the look. For others, well,...Lily Munster's hair looked better. You may try dyeing the white hair but for the most part white hairs don't take dark colors very well. In this case you may try dyeing it a different color, how about blonde? If dyeing your eyebrows, let a professional salon do the job. Salons have available special stains as other dyes contain harmful chemicals which may cause skin irritation and blindness. The dye is applied with a toothpick over the hairs themselves as skin contact will result in staining. Again remember that this is a dangerous procedure which according to the FDA may be illegal.

It may be of interest to note that other hair color changes may be a sign of exposure to different chemicals. Copper (particularly from swimming pools), mercury and brass may all produce green hair. Similarly, permanganate produces a purple color and resorcin a yellowish discoloration.

WIGS

Is there any evidence that wearing a wig will inhibit or hamper hair regrowth?

Most of our members believe that this is not the case. AA appears to be internally mediated through the immune system- a wig should not alter that mechanism. If anything, some of the participants within our list server have complained of the fact that the double-sided tape used in some types of wigs has caused them a severe irritation. They may wear the wig without the adhesive but on windy days that is virtually impossible (another plus for suction wigs). Hair regrowth can be hampered only if you suture the wig and leave it in place for several years. The resultant scarring traction may cause the loss of any remaining viable hair follicles.

Another problem with wigs is that people get accustumed to the same hair style.

A new wig day may be filled with anticipation. Yet most times the resultant anxiety of a new wig day is not deserved. One of our members changed her hair style on a weekly basis. Her hair went from long to short and back to long again. Even though she worked with really observant people (engineers) nobody seemingly noticed. Some people assume that your style will change, that you are going to get your hair cut regularly. Other people aren't observant enough to notice WHAT has changed, only the fact that SOMETHING has changed. So, if they see you with a new wig, they may attribute the look to a new set of glasses. Never fear, no one's looking at you that hard to begin with! Few people look closely enough to notice all of the things we obsess about in the mirror.

If you still feel anxious about changing your wig, a useful remedy is to be out of work for a few days when trying it for the first time. It may give you some time to get used to the wig. Furthermore, people may assume you have gotten your hair cut and styled during your vacation. However, if anybody asks tell them the truth. It is best to let your coworkers know rather than have an accident that reveals it all.

What can I do about a scratchy wig

This tip comes from Peggy Knight's mother, Vinnie. Many years ago when they were both suffering with scratchy heads she came up with an idea that works. They bought 100% cotton material in the color brown (to match their synthetic wigs). After finishing the edges of a 18 inch square giving them a "head scarf", they then proceeded to wash it 10 times. Most fabric comes with a great deal of sizing which can be uncomfortable on the head. The limp scarf was then folded into a triangle and tied on the head like a bandana. The synthetic wig was placed over the scarf and it fulfilled four purposes. 1. It kept the wig on tightly. 2. It prevented the wefts from showing when the wind blew. 3. It kept the head from itching. 4. The scarfs absorbed the perspiration keeping the wig cleaner. They each had several head scarfs and washed them frequently. They were much cooler than the nylon wig liners.

Another possibility for the scratchy wig is to use a "hose" cap under the wig. Take a panty hose, cut it above the crotch and take the cotton part off, and sew the part that you cut together. You will end up with a kind of square cap where the waistband is the edge of the cap. Slitting the waisband may make it less tight.

Can you buy a wig (e.g., through a catalog) and have it resized to a smaller size?

Wig resizing is easy. Most stock wigs are "one size fits all" and are usually too large for the average head. If you stick to the petite sizes only, your style selection is limited.

To remove bulk from a synthetic or human hair wefted (sewn in rows) wig simply remove one or two of the rows. Turn the wig inside out and examine the way it is constructed. Using scissors, cut the up and down elastic bands above and below the wefts to be removed. I suggest that you remove the wefts at the nape of the neck and not the top to avoid a change in the style.

Once you have cut the elastic bands pull the wefts to be removed away from the wig and cut them from the body. This will leave you with a big gap at the back of your wig. Now go back and re-attach the elastic bands.

My only word of caution, do not try to resize an adult wig to fit the head of a child. You can size it to fit but the styles are usually too mature. You are better off ordering the child's size. I don't recommend a child's size wig for an adult with a small head for reverse styling reason.

What do you do with the wefts that have been removed? Sew them to your baseball cap at the nape of the neck. You can also wear then as bangs under a scarf.

I suggest that you first experiment with an old wig before cutting into a new one. And by the way, don't throw that old one away as it can also be cut up and used under hats and scarfs.

What are those pimples on the back of my neck?

Recurrent pimples on the back of your neck may be a reaction to the elastic in your wig. One thing that some of our participants have found helpful with pimples, boils, etc., is a topical solution of tea tree oil. It has excellent antibacterial properties (antifungal as well). Somewhere I read that you should not put undiluted tea tree oil on our face---so prepare a solution of which is a bit weaker than usual.

What can I do about sweating during those hot summer months?

Some people have found good results using antiperspirants on their scalp. One brand that can readily be obtained at Walgreens is called 5 Day Antiperspirant. There are 75 pads in the jar for $5.99. You can use one pad immediately after your morning shower. This measure will prevent perspiration as well as having your wig unstick because of the heat and humidity of the summer months. Five Day Antiperspirant is manufactured by Menley and James Laboratories, Inc., Horsham, PA 19044-3697. There is a telephone number 1-800-321-1834. The advantage of a suction wig is that one can go into a private area, preferably one with a sink, whip it off, wipe it down and plunk it back on (the wig, that is, not the sink).

What happens that makes the hair of wigs tangle at the nape (the back) of the neck?

Tangling of wig filaments can occur from several sources, depending on the wig's material and method of construction.

Natural human hair wigs can tangle from the weave of longer hairs into multiple strands. Frequently, the hair strands are woven in and out, in opposing directions in the same strand, so the outside surfaces (cuticle) rub against each other and snag, causing tangles. Even hairs woven unidirectionally can snag and tangle, but conditioner is alleged to prevent some of this. Sometimes this hair cuticle is removed to avoid tangling, but the disadvantage is the hair is smaller and sometimes more fragile.

Synthetic fiber tangle mostly from damage... kinking from hard brushing, wet brushing/combing, or from heat damage kinking from hot water washing or blow dryers.

Of course, the neck nape area gets a lot of motion and rubbing, so it is a problem site. Kinks can be cut out to avoid some tangling. Hair length at the nape can be changed to eliminate some future tangling/kinking. Sometimes raising it above the collar works, sometimes letting it overlap the collar does it. Some people may have to avoid wearing chains or using turtlenecks. You may consider changing to a short style wig, to keep the hair off of your collar (especially in the winter, when you wear a lot of turtlenecks.)

There is a commercially available detangler for wigs that may be of help. The product is made by Sebastian and is called "Systema Laminates". It looks kind of like a gel, comes in a 1 oz. bottle and has an eyedropper type applicator. The easiest way to use it is to put some in your hands and then smooth it on your hair. It feels sticky on your hands, but it rinses off easily, and doesn't make the hair sticky at all. It just takes a TINY bit, and so it lasts forever.

A great deep conditioner called Keraphix by Nexus may also get the wig to behave. After you wash your new wig you might want to put about two table spoons full of a deep conditioner on the wig, comb it through, and let it sit for about three to five minutes. Be careful not to condition right on the cap because a build up of conditioner can cause the hair to loosen and hair loss can result. God forbid the wig should develop alopecia too, lol. Also, comb any tangles out of the wig when you take it off at night before you put it on the stand especially at the nape of the neck. That should have your wig feeling soft and smoother not at all like a hairspray queen

How do I wash my wig?

How do I get rid of the smell in my wig after being in company with several smokers?

Some people have tried washing their human hair wigs with white vinegar which gets rid of all buildup and leaves the hair shiny and clean. It is unsure if this is a safe method for use with synthetic wigs.

How do I preserve the color of my wig?

There are a variety of products available for maintaining color in human hair pieces. One of them is called ARTEC color enhancing shampoo.... some other companies have coloring shampoos also, but be careful with them, as they can be too intense for oxidized hair pieces.

WHAT THERAPIES ARE AVAILABLE AND WHAT ARE THEIR SIDE EFFECTS?

MEDICATIONS

“Results interpreted from a single case seem to be promoted WAY beyond actual therapeutic effectiveness.”

“...I have tried that approach, plus chinese herbs, supervitamins (that I have spent a fortune on), etc. I am great for chasing rainbows. But I do know the reality is that I have an autoimmune condition and I cannot change that.”

“I have often read on this list that many parents have treated their own children as though they were 'defective', and that when treatments for regrowth failed, they felt that they had failed their parents. that would be a bad burden to add to the hardship of alopecia!!”

Treatment for alopecia areata has been called optional, this is only to say that available treatment is not all that effective and certainly not curative. Some doctors refer to it as "idiopathic" which is a doctor's way of saying, "duh?". Most therapies in AA modulate the immune system rather than strengthen the same. The use of phenol or UV, at erythema doses, act as an irritant; topical and intralesional steroids suppress manifestations of inflammatory and immune reactions (most importantly they impair the synthesis and expression of that chemical factor which promotes the proliferation of activated inflammatory cells at the base of the hair follicle in patients with AA); topical immunotherapy employs sensitizing chemicals to induce a contact dermatitis. Given the large number of side effects from these therapeutical interventions most alopecic sufferers are always on the look out for alternative treatments. After a while, it becomes evident that there are a limited number of treatments that continue to be recycled as patients question their options.

It has been my impression that afflicted individuals are so desperate that they are willing to try anything. I think this is just part of the process of coming to terms with the disorder. In some way I think many of our patients could have come to accept the condition without having tried everything they could. For their own peace of mind they HAD to make absolutely sure that there was not some miracle drug out there. Remember that there are several nearly foolproof ways of gaining wealth in the world. One is to write diet/self-improvement books for sale in America and the other is to concoct a treatment for baldness. When reading a success article on alopecia areata keep in mind that the illness turns itself on and off in unpredictable fashion. This means that one person's temporary yet "effective" cure is another person's loss of time and money.

CORTICOSTEROIDS

“Many people give up on doctors and try alternative treatments. When the alopecia goes away by itself, they give the credit of a "cure" to the last treatment they were taking. Most are confused and disappointed when the "cure" doesn't work for them the next time alopecia returns.”

“I get Kenalog injection and locals in problem areas every 4-8 weeks. I look like I've been attacked by a swarm of killer bees afterwards.”

“To add my 2 pesos on steriods. I have had very good results from the injections -- nearly 100% regrowth, same brown as the rest of my hair. However, I started to notice side effects when my hair loss progressed. I do not find the injections particularly painful, but they did cause a puffiness in my face at one point, and I felt feverish. I also experience growth of facial hair (NEVER had this before) at a time when I think the steriods were building up in my body.”

“As a teen, I remember baracading myself in the bathroom at the derm's office for hours getting "psyched" up for the injections. I normally took Tylenol before the injections, to sort of numb the pain, and I *think* there was a little bit of an anesthetic mixed into the injections. One thing my mom (and derm) learned quickly (when I nearly cleared out his waiting room with a high-pitched scream) is to stay away from the areas near the hairline. They're populated with highly sensitive nerves. Because of this, I had one spot over the ear and one at the neckline that never filled in. But I preferred these spots (easily disguiseable) to the injections....and speaking of preferences....

“Please make sure your son or daughter there because she wants to be there, not because you want her to be, or that she thinks treatments are the only option. Your child needs to know that she can stop the injections at any time she wants, AND (and this is very important for her to know) you and your family will love her just as dearly as you do now, no matter what treatments she takes (or doesn't take) and what her hair looks like.

“After a year or so of injections, my mom and I struck a deal. Topical steriod creams ONLY, unless the spot got to be bigger than a quarter. This helped to alleviate the pain accompanied by chasing little spots around with a needle, while not letting them get so big that injecting them would be a miserable experience for me (and mom). I think this worked well for the both of us, though it really annoyed her that I had dad verify the size of the spot before consenting to the dr's appt.”

Note when reading this section that sometimes the bearer of bad news is at times mistaken for the message. Corticosteroids are the most commonly used drugs. Susceptibility to the side effects of steroids will vary from patient to patient. Reported side effects in patients with alopecia areata include adrenal suppression, skin atrophy and fragility (producing a fragile skin and striae), small skin hemorrhages, acne, opacities in the lens of the eye, hypertension, menstrual abnormalities, increased appetite, impaired wound healing, a disorder of calcium balance leading to osteoporosis, psychiatric symptoms (e.g., euphoria or depression), diabetes, glaucoma, cataracts, and gastric hemorrhage. In children we should also include growth arrest as a serious side-effect. The toxicity due to systemic administration may be diminished by local applications with topical ointments.

Considering the potential side effects of steroids, topical administration has proven of greater benefit than systemic administration. Patients should be aware that their application increases the possibility of infection such as folliculitis. In order to avoid this complication, frequent shampooing should be recommended. Also, be careful when injecting steroids in the eyebrows. The injection site is very close to the eyes and a lot of the side effects of steroids are related to ocular complications. If faced with a decision between needle injection and jet injection of the eyebrows, take the needle injection. There have been a few case reports of occlusion by steroid crystals of the ophthalmic artery when injected near the eye. DANGER: The chronic use of corticosteroids around the eyes may lead to increased intraocular pressure, acute glaucoma, and cataracts. Another complication of steroids to watch for is skin atrophy due to overtreatment. I believe that there is always hope for recovering hair in alopecia areata but not if the skin has been damaged. Sometimes physicians will soft peddle these issues because they think either the patients/or their parents will over react. You should be aware of priorities (e.g., if your child has asthma treating the respiratory condition is a necessity as uncontrolled asthma may be a life threatening condition) but you should also be aware of all possible complications in order to make an informed choice.

The usual recommendation is to apply topical steroids twice daily in small amounts to affected scalp. Avoid using the solution over the face or skin folds. The solution is applied by rubbing into the scalp. If skin irritation, infection, or ulceration develop you should stop its use and consult your physician.

For how long should I continue using steroids?

Steroids have been used topically with minimal success and very little data regarding therapeutic guidelines. Some studies show that they are most beneficial when the hair loss has been present for less than a year, and poor if it has been present for a long time. Treatment with topical steroids may be continued for up to 3 months before evaluating hair loss. Corticosteroid injections have been more effective if placed in small amounts deep within the dermis. When using intralesional injections, regrowth is usually observed within 4 to 6 weeks. Some Dermatologists may use steroids for longer periods of time but close monitoring of side-effects, especially skin atrophy, is necessary.

Is there a limit to the number of steroid injections, or amount of the same, I may receive at one time or during the course of treatment?

The total dosage will vary depending on the corticosteroid or its preparation. One can probably consider a particular medication and then extrapolate to others based on equivalent dosages or potencies. In the case of triamcinolone (many Dermatologist like it because it acts for long periods of time- Aristocort, Kenalog are commercial names), injections amount to 0.05 mL for the acetonide (10mg/mL) or 0.1 mL of the hexacetonide (5 mg/mL). Adult patients should try not to exceed 10-20 mg per month distributed throughout the scalp in order to avoid adrenal suppression. Since side-effects depend on total dosage, the use of intralesional injections is restricted to patients that have lost less than 50% of their hair (otherwise the total amount of drug required to cover the affected area would be prohibitive). Systemic injections to the dermis are usually spaced 0.5-1 cm apart. Injections are usually repeated on a monthly basis.

In the case of children you would use a diluted solution (half the strength of adults) and inject a maximum of 1 or 2 ml at 4 to 6 weeks intervals (no more than 1 injection per site per month). Incidentally the same diluted solution used in children is also used in adults when injecting the eyebrows.

What are the side-effects of chronic steroid usage, are they reversible?

“After nearly 20 years of injections-on and off-I wound up with skin stretched so tightly against my skull that it hurt all of the time, and lumpy skin around my eyebrow area.... After several months of intense eyebrow injections, the Kenalog ceased to be effective, and the brows fell out anyway.”

“(Re:corticosteroids)... I have had no side effects to speak of. Maybe I just have a little cortisone guardian angel on my shoulder.”

“I had those shots in my hip and head over the years (not continually) and indentations did occur on my head, hip and buttock areas. Sometimes they were deep! But the steroid eats away at the fat (I'm guessing) and it will eventually fill back in. I felt when my scalp was sinking in. I would get a cold chill on my neck. Sickening for me to recollect. But the shots stopped doing their magic and my scalp is scarred or thickened in the spots where I had injections. It got to the point where the nurse could hardly get the needle through the skin. The hair that did grow didn't feel like healthy hair, so I gave up on the shots. Not to mention, the hair fell back out as soon as the treatments were over. Not for me anymore.”

“I came in for my derm appointment one day and said, 'My weight has blown up like a balloon. Can this be a side effect of the cortisone shots?' The doctor looked uncomfortable and said, 'Well,yes,sometimes...' and I said, 'Let's not do this anymore.'”

The main cutaneous side-effects of chronic topical/intralesional steroids are striae and atrophy. In general, skin atrophy does not occur until at least 2 to 3 weeks of continous daily steroid use. Once established the atrophy may interfere with hair growth itself. Recovery can happen if you promptly discontinue their use at the first sign of atrophy. However, skin atrophy may require 6 to 12 months for it to resolve. Therefore as a rule: NEVER RE-INJECT AN ATROPHIED SKIN (one that has lost tissue or looks depressed). Other side-effects that may be reversible include: infections of the hair follicle (folliculitis), excessive hair growth (believe it or not), an acneiform eruption, some spidery-like vascular markings in the skin (telangiectasias or enlarged blood vessels), and depigmentation. Hypopigmentation is the result of injecting the corticosteroid superficially into the skin.

Theoretically bovine collagen could be injected into depressed scars/skin to improve their appearance. However the procedure is expensive and has to be repeated (about every 6 months) as the collagen is reabsorbed. Patients with a history of autoimmune disorder should be excluded from this treatment.

I have taken the following table on side effects of steroid therapy from Boumpas DT, Chrousos GP, Wilder RL, et al.: Ann Intern Med 119:1198, 1993. The notes in [brackets] are mine.

Characteristic early in therapy, essentially unavoidable:

Common in patients with underlying risk factors:

Anticipated with use of sustained and intense treatment:

Insidious and delayed:

Rare and unpredicatble:

(Although not related in the medical literature some people also complain of body odor that cannot be washed off.)

I can't provide numbers as to what constitutes sustained and intensive therapy or what is meant by insiduous or delayed side effects. Quoting from the same article (Boumpas DT, Chrousos GP, Wilder RL, et al.: Ann Intern Med 119:1198, 1993), "The risk of these complications (corticosteroid) are theoretically dose- and time dependent. These complications range from minor to severe, early to late, flagrant to insiduous, expected to rare, and tolerable to intolerable."...so even the experts can't give an answer that applies to all cases.

The terms insidious and delayed are used for complications that depend on cumulative dose, e.g., there have been several studies of osteoporosis in asthmatic patients (that need chronic usage of steroids) showing that bone reabsorption is not altered by intermitent therapy, the risk factor is therefore with total dosage. Once these insiduous and delayed complications develop (i.e., osteoporosis, skin atrophy, cataracts, atheroscelrosis, growth retardation, fatty liver) they may not be reversible but their progress can be stopped by withdrawing the offending agent (the corticosteroid).

Injections to the eyebrows have their own set of complications. Case reports of blood vessel occlusions by the crystals within the steroidal solution have been reported. These solutions have been improved and this complication is nowadays very rare. If brow injections are done on a regular basis, the patient should have a baseline eye exam with regular follow-up exams checking for cataracts and glaucoma.

In similar fashion the use of topical facial steroids have been related to glaucoma and extensive visual loss (Aggarwal RK et al. EYE 7:664-666, 1993). The referenced article describes a series of 5 cases that came to clinics in the UK during a period of approximately 1 year. Three of the cases had advanced glaucoma and 2 manifested ocular hypertension. They all had used topical steroids to the face for the treatment of eczema. Steroids were applied to the eyelids or near the eyes continuously or intermittently for a period of 2 to 12 years. The loss of vision tied to the use of steroids was insiduous and was often accompanied by the development of cataracts. Depending on the extent of the damage, the resultant blindness was not reversible by simply withdrawing the steroids.

In a review of the literature Aggarwal et al.(1993) state that there are predisposing factors to the development of steroid induced glaucoma. Among these are the age (young people apparently more predisposed), use of steroids for several years, presence of chronic open angle glaucoma, a family history of steroid responsiveness, myopes, diabetics, and patients with connective tissue disorders. Other side effects of facial topical steroids include exacerbation of primary herpes simplex and cataracts.

The authors conclude that facial steroids should be used sparringly in predisposed individuals and those in need of prolonged applications should be frequently screened for glaucoma. In addition, patients should wash their hands after each application to avoid further eyelid contamination with the steroid cream.

Is there anything to watch for in terms of steroid side-effects in children (e.g., growth retardation)? Are they reversible?

Topical (applied to the "top" of the skin) corticosteroids usually pose no problems if they are of mild potency and you avoid the use of occlusive dressings. The main side effects to consider with topical corticosteroids are skin atrophy and, from my own experience, bone reabsorption. Serious side-effects are primarily due to the injected or oral administration of the drugs. Nowadays the use of this type of therapy is rare and probably considered only for carefully selected cases showing either severe involvement or serious psychological handicap. The side effects to consider are cataracts, osteoporosis, growth suppression, compression fractures and hypertension. We also know of several children who developed glucose intolerance with systemic steroids in whom the diabetes never reverted after discontinuing the drug. In any case, it would seem mandatory to follow a child closely for potential complications. This should be done at least every 3 months by a non-Dermatologist (e.g., a Pediatrician). In the initial exam a tuberculin skin test should be done. Follow up visits should include blood pressure checks, laboratory testing for urine and blood sugar, ophthalmological examination and plotting of growth parameters (weight and height on a chart). Growth retardation, one of the side effects of corticosteroids in children, may be reversible but not completely so. The best cure is always prevention, if not, try to catch any complications as early as possible.

Why does the efficacy of intralesional injections of corticosteroids seem to vary from Dermatologist to Dermatologist?

In a certain way injecting corticosteroids into the scalp is more of an art than a science. There is a lot of "feel" employed by the physician when injecting these drugs. The procedure entails introducing the needle almost parallel to the skin and gauging the force needed to compress the plunger and distend the skin. If the plunger is easily compressed, the needle may be too deep and the injection won't produce any beneficial effects. On the other hand, if the plunger is only compressed with difficulty, the needle may too superficial. This may promote the formation of skin atrophy and ulcerations.

The use of air guns, similar to those used for mass vaccination, has also been used with corticosteroids. Most Dermatologists shy away from their use because they are erratic in terms of injection depth and an increased risk of postinjection infection.

How can you reduce the pain and swelling of steroid injections?

“The first one was okay (I only thought I would get ONE injection in each spot), then he said "that is what it will feel like" and proceeded to give me 10 injections in the back and 4 in the front. All of the other injections in the back of the head really hurt. All he could say was that he must have been hitting nerves in my head, that he could not "see" the nerves, and the only way he would know is by my reaction. Can't they numb the area first????? Is this standard procedure??”

To reduce pain during the injection a Dermatologist will use a topical cutaneous anesthetic such as fluorethyl ethylene chloride spray or a topical anesthetic cream containing 2.5% lidocaine (available as a cream called EMLA). If you apply this cream under an occlusive semi-permeable dressing for 45 to 60 minutes prior to treamtment- it will minimize the discomfort of the injections. Some doctors have also found that running one of those small, battery-powered hand massagers over the scalp alleviates the pinching sensation of multiple injections.

If you perceive the pain after a series of injections remind the Dermatologist that the needle becomes dull with use just like any other sharp tool. After using it for some 10 injections ask for it to be changed. You will find that it slips right through the skin again.

To reduce the pain and swelling after the intralesional injections, extra strength Tylenol and cool compresses are usually all you will need (according to the Dermatologist).

Is there a difference between the types of topical steroids being prescribed?

Yes, there is a difference. There are several classes of topical steroids available. Superpotent and potent topical corticosteroids (classes 1 and 2) may be used alone or under occlussion (under a wig, bathing cap, or Saran wrap). They are used primarily for application over very thick normal skin (soles) or skin thickened by either pathology (e.g., psoriasis) or chronic rubbing. The United States Pharmacopeia (USP) has indicated the use of only medium to high strength topical steroids in alopecia areata.

Medium potency corticosteroids include (some trade names in parentheses):

High potency corticosteroids incude (some trade names in parenthesies):

What can you add about going off steroids abruptly, especially after long-term use? And what exactly is long-term use?

I would probably have to look into medical textbooks, but in my clinical experience up to two weeks of therapy may be considered a short course, one with low risk for side effects. Anything over 2 months I would consider chronic. In people receiving substantial amounts of steroids for several months their sudden withdrawal may entail a suppression of their adrenal gland. This may be a life-threatening complication. After very prolongued corticosteroid therapy, the adrenals may take months to a year to recover. There is also a withdrawal symptom association with steroids which apperas unrelated to adrenal function. It is characterized by fatigue, joint and muscle pains, and occasional fevers. High-dose, "pulsed" steroid treatment do not suppress the adrenals nor cause osteoporosis. However, reports or trials with pulse steroids in alopecia areata, systemic lupus erythematosus, or rheumathoid arthritis remain controversial. They tend not to have controlled observations and lack data regarding efficacy, duration of efficacy, nor dose-reponse.

My own feeling is to keep away from corticosteroids as much as possible. They may be lifesaving under certain circumstances, but their overall role is usually controversial. After decades of experience there are still many rheumathologists debating the guidelines for their use in arthritis. They rarely provide optimal control of chronic inflammatory conditions and may need the help of other immunomodulatory agents. For those disorders they tend to control, an indefinite low dosing may be necessary in order to prevent flares of the condition.

What is steroid rebound?

The rebound effect referes to a compensatory change by the body once a particular stimulus has been withdrawn. Probably the best know rebound effect is how sleep deprivation (especially the REM stage) is followed by catch-up sleep. The rebound effect has been associated with steroids in particular. Short courses of steroids in some cases of hepatitis may be followed by liver decompensation, withdrawal in psoriasis may give rise to exacerbation of the condition, and there is a rebound or flare response of the skin after corticosteroid induced skin atrophy. Some anecdotal experiences also refer to a rebound effect of corticosteroids in asthma and gout. I haven't read a scientific report of steroid induced rebound hair loss in alopecia areata (although curiously enough there is for minoxidil in androgenetic alopecia). However, there may have been over at least a hundred reports on this list server that this may be the case.

PUVA

“I too tried PUVA for 9 months and it didn't work for me. My Derm got new furniture for his waiting room though.”

“The only treatment I have had which had some effect was PUVA. But I wouldn't recommend it to anyone. The side effects was itching especially on my shoulders (lasting long time after I stopped the treatment) stomach ache and headache - coming from the pills I had to take before every treatment. In addition, the rest of the day after a treatment (which was 3 or 4 times a week) I had to wear goggles - on top of the normal glasses I already have ! - to protect my eyes from the sunlight. I wasn't looking to good. And - much worse - one day during a treatment I couldn't understand why the light suddenly was extremely hot and burning, but I stood it out thinking it was just me feeling different that day. It turned out though, that the nurse by a mistake had switched on the wrong set of lamps ! Instead of the UVA-light I was in 25 min. exposed for a high intensity UVB-ligt normally given in small doses of max. 5 min. Having taking the pills I was even more sensitive to the light. My skin was completely burnt. After that I stopped the treatment.”

“The only thing that was a concern was the cost of the drug. PRETTY EXPENSIVE. And apparently there is no generic type, even though there are a number of brand names for psoralen. I'll write the drug names at the end of this message. My drug book is an older copy, so I don't know if there are other newer ones-or if some of these may have been discontinued. The receptionist at the doctor's office said that she thought that all brands would probably cost about the same but that it would be worth it to check around with different pharmacies to price the drug. Also--many drug stores do NOT carry this drug--so be SURE to call around ahead of time and find a place that does carry it.

“I did NOT feel sick, nor did the enclosure bother me (whereas an MRI DID). The enclosure is like a circle and has a door that swings open. The top was open. The door swings shut but there was a button up above which I could press to stop the treatment at any point if I found it disturbing. I was only subjected to about 25 seconds of light (about a half a jewel, she said). I will go twice this week and then perhaps begin a three time a week treatment. Please remember: I am NOT doing this for my hair, although I'm glad to have a chance to try it for the alopecia as well. I am doing this because of my skin sensitivity--polymorphic light eruption--which has been getting progressively worse each summer.

“The pharmacist said that the psoralen makes one in ten people very nauseated. She also suggested that I break the dosage into two parts and take the first pill 2 hours before the treatment, the second one, one and a half hours before the treatment.

“By the time I got home, my skin was slightly reddened (this was only UVA light—not UVB) and it was clear that I had had some reaction to it. UVA does not tan—and the light comes through on cloudy days and through the windows in a car or in a house. Hopefully, this will cause my skin to "harden" and be less sensitive. I may have to have this treatment every spring.”

“I just recently was diagnosed with melanoma. Several years ago, about 7, I had the PUVA treatment. And about 2 weeks ago, I had major surgery, removing all my lymphnodes in my throat. I think anyone who is condidering the PUVA treatment should really consider if growing your hair back is worth all the pain and suffering of learning you are diagnosed with cancer and going through a 7 hour surgery! I have been told over and over that I am extremely lucky that I caught it early (a few months after a mole-like lesion appeared on my temple). If I hadn't gone to my dermatlogist for discussing my alopecia, I may not have done anything about it!”

The acronym PUVA stands for psoralens and UVA therapy. Psoralens are chemical compounds found in plants such as lemon, bergamot, parsley, and celery. They have been used now for centuries in medicine primarily for vitiligo. They are not effective by themselves, but rather, after ingestion the patient must expose himself/herself to sunlight. After a few hours of exposure to the sun, the skin shows signs of an acute inflammatory response which resolves leaving behind some repigmentation. Probably the major historical breakthrough for this type of therapy is due to commercial mass production of fluorescent lights capable of radiating long wave ultraviolet A of adequate intensity. Before the introduction of commercial sources of UVA, sunlight suffered from lack of predictibility. The emission spectrum of sunlight, as well as its intensity, would markedly fluctuate during the day. Incidentally, tanning lights and other sunlamps do not offer the appropriate spectrum of UVA to make them as effective.

Nowadays physicians combine Psoralens and UVA therapy in what has been called “photochemotherapy” (not to be confused with photodynamic therapy). Researchers believe that photochemotherapy acts at a molecular level by combining the psoralen with our genetic DNA. The end result of this interaction is that resting melanocytes (the cells that produce the pigment in the skin and hair) located deep in the hair follicles become activated. In psoriasis, atopic dermatitis and alopecia areata PUVA's mechanism of action most likely relates to its effect on antigen presenting cells, lymphocytes and other inflammatory cells.

PUVA is an extremely important type of therapy for certain conditions such as psoriasis, vitiligo, atopic eczema, etc. There have also been many studies showing varying degrees of success for hair regrowth in patients with alopecia areata. Unfortunately, the relapse rate after discontinuation of therapy is high (50 to 90%) and ultimately it does not appear to affect the eventual outcome of the condition. Cost is moderate, approximately some $55/treatment, 3 times per week. Usually 20 to 40 exposures may be necessary to achieve any benefit. The psoralen tablets, on the other hand, are very expensive, 50 tablets may be worth $250.

The following are criteria used in order to qualify a patient for PUVA therapy:

Some exclusionary criteria- A history of arsenic or previous ionizing radiation, the presence of melanoma or other skin malignancy, cataracts, severe cardiovascular, hepatic or renal disease, and immunosuppression. Absolute contraindications include pregnancy, lactation, albinism, lupus erythematosus, and history of any other light sensitive disorders. I would never recommend this treatment for children.

Inclusionary criteria- In order to qualify, you should have a good skin type, i.e. one that sometimes or never burn, but tans. If you always burn and never tan, PUVA therapy should be used only as a last resort.

Some side effects of treatment include skin inflammation in about a quarter of the patients; fewer feel nausea, itching, dizziness and headaches. Long term side effects include premature aging of the skin (wrinkles and atrophy), cutaneous malignancies, and the theoretical risk of cataracts. You absolutly have to stay out of the sun on treatment days (pretty hard when you live in Miami, FL or a similar place) and you get the most incredable tan. The itching can be treated with antihistamines, nauseas can be minimized by taking the psoralens with food or milk. In order to avoid cataracts goggles that filter UVA are mandatory for the first day of treatment and are recommended during the second day.

Patients that receive PUVA therapy should obtain ophthalmological examination prior to initiating treatment, at 6 months, at 1 year after commencement of treatment, and yearly thereafter. Patients that receive PUVA therapy should also be followed for any future development of atypical or malignant skin lesions.

Be careful about taking any supplemtal vitamin D during PUVA therapy. PUVA automatically causes vitamin-D (hormone) to be synthesized in the skin. Adding additional amounts, orally, may NOT be recommended because excessive vit-D can be toxic. Also, applied topically it can cause hyperpigmentation. Below is a perfect example of what NOT to do.

Dtsch Med Wochenschr 1975 Feb 28;100(9):412-5 FATAL VITAMIN D INTOXICATION (article in German) Laubenthal F, et al.

A 43-year-old man with alopecia maligna was treated for 4 weeks with a total of 130-mg vitamin D3. Two weeks later, after intensive exposure to the sun, he developed a hypercalcaemic crisis and died 5 weeks later of acute cardiac failure. The hypercalcaemia proved treatment-resistant despite good diuresis. Causes other than vitamin D intoxication were excluded clinically and on histopathological investigations. ....

Review of the Scientific Literature:

PUVA- the treatment of alopecia areata by oral or topical psoralen and exposure to long-wavelength (320-400nm) ultraviolet A radiation was reported in the Russian literature by Zheltakov in 1967 and as an alternative treatment in the United States in 1978 (Weismann et al.). It was discovered that psoralens bind to cellular proteins and increase UV absorption. Researchers have found that one of the side effects of PUVA therapy is Onycholysis (Morgan et al., 1992). Photo-onycholysis was first reported in patients who, following ingestion of psoralen and exposure to natural sunlight, developed onycholysis (Zala et al., 1977). Other possible side effects of PUVA therapy are catarctogenesis (Cyrlin et al., 1980) and skin carcinogenesis (farber et al., 1983). Initial studies that investigated the effects of PUVA therapy on 30 patients to determine the effectiveness of whole body PUVA treatment in patients with differing degrees of alopecia severity determined that the benefits of the treatment do not seem to outweigh the possible side effects of long term PUVA treatment (Van der Schaar et al., 1984). Patients were given 10-mg capsules of 8-methoxypsoralen/30 kg body weight two hours prior to UV irradiation. Total body irradiation at 310-380 nm was given three times a week. The dosage was 1J/cm2 at a distance of 20-25 cm. Of the 30 patients, 1 had hair growth with no recurrence for 2 years after the study. Good hair growth was obtained in 8 (27%) of the patients but with disease recurrence. Poor result (regrowth with recurrence during therapy) was seen in 7 (24%) of the patients. Ten patients (33%) had no regrowth. Four patients stopped the therapy. This study provided little evidence that PUVA is an important treatment for alopecia as only one patient displayed lasting regrowth of hair after treatment. Comparison of the treatment failures with the patients showing good results gave no significant difference concerning age of onset of AA, duration of the disease, and age at which therapy started. Seven out of the nine patients that had a good outcome had a past history of spontaneous regrowth. Patients with alopecia universalis showed to reaction to the treatment.

Another study (Amer et al., 1983) looked at the treatment of 10 patients (6 men and 4 women) with alopecia areata (5) and totalis (5). Patients were given 8-MOP orally in 0.6 mg/kg of body weight doses 2 hrs prior to UV treatment. This was done for the first 5 treatments. A topical solution of 0.15% 8-MOP was used for the remainder of the treatments 1-hour prior to UV treatment. Treatments were given two times a week for 9 months. The initial dose of UV was 2 joules/cm2 and increased 1 joule/cm2 every four treatments. Results of treatment were:

AT1good result (after 33 treatments) at 135J.
2poor results (180/295J)—sparse regrowth.
2no hair regrowth.
AA1moderate to good response (170J) 40 treatments.
4o response.

It was noticed that patients with multiple patches of hair loss did not respond to treatment. The authors suggested that due to the possible side effects of treatment with full body UV irradiation, this treatment should be reserved for those patients that express a long duration resistance to other treatment modalities.

Larko and Swanbeck (1983) used PUVA treatment to treat 40 (17 men and 23 women) patients with alopecia totalis. The mean duration of total alopecia was 8.8 years. 9 of the 40 had previously experienced remission of symptoms. Patients took 8-MOP in oral for at a dose of 0.6 mg/kg of body weight 11/2 hour prior to UV treatment. The average time from start of total alopecia to PUVA treatment was 7.2 years. 26 had no regrowth, 6 partial regrowth, and 8 had complete regrowth. Again, there was an inverse relationship between the onset of the current disease state and the effectiveness of the treatment. The patients that responded to treatment were younger than non-responders. 35% of patients experienced hair regrowth but only 20% a full hair regrowth. Median time to relapse was 10 weeks after cessation of treatment. Whole body treatment did not produce significantly better results than localized treatment. Background factors such as associated disease, duration of the current disease, and time from first symptom of alopecia to PUVA treatment did not influence the response to PUVA therapy. Again, the results obtained do not differ significantly from the normal rates of spontaneous remission. Another PUVA treatment study of 23 patients (7 women and 16 men) with alopecia (7 AA, 13 AT, and 3 AU) revealed that there appeared to be a positive relationship between hair growth and the energy delivered during treatment (Claudy et al., 1983). The duration of the disease ranged from 3 months to 17 years. Follow up period was 18.6 months. All of the patients had been resistant to previous topical therapy of the administration of systemic steroids. UV treatment was high intensity irradiation between 320 and 400 nm. Methoxsalen was given orally (20 patients) 2 hours prior to UV treatment in a dose of 10mg for body weights less than 25kg up to 60mg for body weights greater than 90kg. 0.1% solution of Methoxsalen was applied to the scalp in 3 patients. Patients were irradiated 3 times a week. UV treatment was increased by 1J/sq cm on odd numbered exposures. Six patients had UV radiation limited to the scalp. Among these 3 had topical and 3 had oral Methoxsalen treatment. 17 patients received total skin irradiation. Treatment with local irradiation to the scalp in patients with alopecia totalis was nonresponsive in both oral and topical treatments. 5 of 7 patients who received oral Methoxsalen and total skin surface irradiation responded with moderate to good regrowth. 7 of 10 patients who received oral Methoxsalen and total skin irradiation responded with moderate to good regrowth. 10 of 23 patients had no regrowth. There appeared to be a positive relationship between hair growth and the energy delivered during treatment.

In 1995, a study conducted at St. Johns Institute of Dermatology concluded that PUVA was an ineffective treatment for alopecia in patients with prior resistance to various forms of intervention (Taylor et al., 1995). Prior treatments included topical therapies (minoxidil, anthralin, steroids, and DNCB), acupuncture, UVB phototherapy, and electrical stimulation therapy. Administration of the PUVA therapy was similar to previously stated studies with the oral dosage of 5-methoxypsoralen at 50 mg/m2 for type I alopecia and 8-methoxypsoralen at 25 mg/ m2 for all other types of alopecia. The application of whole body or local UVA irradiation was dependent on the individual response to the treatment. All patients received two pretreatment biopsies to confirm the diagnosis of alopecia. The effective success rate was 6.3% for alopecia areata partialis, 12.5% for totalis, and 13.3% for universalis. These rates appear to be very similar to the spontaneous remission rates leading the authors to the conclusion that PUVA treatment is an ineffective treatment for most forms of alopecia.

CONTACT SENSITIZERS

“I've used DPCP, it didn't work for me or other AU/AT people. It did work for AA though. I've been off the study quite awhile now so I have no idea how the AA people are doing. It was a pretty miserable experience. Once a strong enough strength was found for me I started with rashes all over my body. If I touched my head and then touched another part of me I broke out there. The rashes lasted for months and came and went on their own, nothing soothed them. Eventually they became less and less and disappeared. My head never reacted besides some itching. Other people got such terrible rashes on their head they couldn't wear wigs or hats. It was like poison ivy, oozy and itchy. I will not use it again. I only did then because I was part of some research using it.”

There have been several chemical compounds that when applied to the scalp cause sensitization and partial hair regrowth. I think the success rates among different treatments (steroids, PUVA, sensitizers) do not differ all that much from each other. Approximately 25% of patients get esthetically satisfactory results, another 25% may obtain some regrowth, and 50% show no response at all. None of the treatments seems to alter the final outcome. Usually articles detailing a positive outcome deal with typical AA rather than totalis or universalis, with patients having a short history of alopecia (rather than one having had the disease for 10 or 20 years), and having normal nails (abnormal nails may mean that the disease is more generalized). Some studies have indicated that the duration of the disease and the age of onset play a role in determining the success of the treatment, while others believe that these two parameters are not all that important.

Several of my patients have mentioned the use of contact sensitizers compounds with variable results. Among the chemical sensitizers in use are dinitrochlorobenzene (DNCB), squaric acid dibutyl ester (SABDE), and diphenencyprone (DPCP). Dinitrochlorobenzene (DNCB) was originally tested, but it has been found to be a mutagen by the Ames test. A mutagen, or carcinogen, is an agent that causes or increases the rate of DNA mutations. Squaric acid dibutylester (SADBE) is non-mutagenic, but is teratogenic, causing abnormal fetal development. Dephencyprone is neither mutagenic nor teratogenic, bur its use is not widespread because there are few people knowledgeable enough about how to use the compound and its effects.Your insurance carrier may not pay for any of these because they have not been approved by the FDA.

The mechanism of action is not clear. I believe they act by either overwhelming or diverting the action of those cells (Langerhans) that present antigens to the immune system. You can envision their action as that of a very small molecule or virus which penetrate the integument (i.e., the layers of skin of the scalp). Presumably the body's immune system will attack it like an invader while in reality it is a decoy. The end result is that the action of inflammatory cells are redirected, thus removing them from attacking the hair follicles.

In order to be effective the compounds need to be applied frequently. The end result is contact sensitization where smaller dosages seem to bring forth larger effects. The focus of the therapy is to cause reddening of the skin without blistering (it's like having poison ivy on your scalp,...ouch!). Side effects include itching and in fewer cases, sleep disturbances, joint pains, fever, and swollen lymph nodes. Occasionally the skin eruption spreads to the rest of the body. If you wear a wig prepare to be without it. May times the itchy scalp can't handle a wig.

If you do use DNCB (it may be legal outside of the United States), be sure it is a recent mixture. The stuff is very volatile; i.e., it evaporates rapidly, thus making the solution more and more concentrated with each usage. Because the mixture is so volatile, I don't think it is usually sold as a standard pre-packaged medication and I doubt that many typical suburban shopping center pharmacies are prepared to mix it up.

Concerns about the mutagenic potential of DNCB have propitiated a shift to other more recently introduced sensitizers. Although medical literature reports some encouraging results, there are others of complete failure, and still others where the pain and side effects far outweigh any benefits. The following story on a realted sensitizer is illustrative:

“I used DPCP for about 6 months. It was awful. It's like having a VERY powerful case of poison ivy...you have to scratch it. I didn't get any results, and eventually my body became so sensitized to the DCP that I would break out in hives whenever I even touched the outside of the bottle! Within a few minutes of application on the hairless area, it would swell and turn very red. I eventually had scarring that removed all of the skin pigmentation from the area. As a result, I now have hair back in the areas where we tried the DPCP (arms & one leg), but I have no skin pigments there, meaning big snow-white blotches that only sunburn, not tan. The hair is also snow white. I don't know if the DCP was the cause of the regrowth, since similar areas in the same vicinity had regrowth without being exposed to DPCP.”

For this patient her DPCP experience was like her body threw a surprise party every day. I have no further information on this case but it is noteworthy that negative results with chemical sensitizers have been reported for patients with a family history for alopecia areata, a family history for allergies, and those in whom the sensitizer failed to produce a dermatitis.

A recent letter to the editor published in the British Journal of Dermatology (134(6):1153,1996) highlights the dangers of this therapy. The letter written by M. Shah, F.M. Lewis, and A.G. Messenger goes as follows:

“SIR, We have used the potent immunogenic agent diphency- prone to treat alopecia areata for several years. The success rate of this treatment has been widely reported and the potential adverse effects in the patient are well-recognized. However, the risks for medical and nursing staff have received relatively little attention.

“In spite of taking protective precautions, three of five members of medical and nursing staff in our department who have used diphencyprone, including two of the authors of this letter, are now allergic to the drug. Adverse reactions experienced include severe local dermatitis reactions, irrita- tion of the eyes and nose and generalized itching. These staff can no longer use diphencyprone and have experienced symptoms by simply entering a room where diphencyprone has been recently used.

“We suggest that the use of this potentially hazardous drug is restricted to trained staff who are fully aware of the associated risks. Application of diphencyprone should be performed in a designated area with adequate ventilation and facilities for safe storage and disposal of the drug and contaminated applicators. In addition, gloves and protective garments must be routinely worn by all staff applying the drug and changed between patients. Pharmacy staff engaged in preparing diphencyprone solutions should also be alerted to the hazards.”

I am very doubful about this type of therapy and consider many of the ongoing clinical trials irresponsible. I still have to find 1 clinical trial in which the researchers first tried these compounds on animals and were able to determine their toxicity after long term applications. After reading the available medical literature I am still not sure what are the effect of continued stimulation of the immune system or sensitization of the skin. I should stress again that some of the compounds (i.e., DNCB) have suggested or proven mutagenic properties- meaning they can elicit cancer formation.

I would personally never consider the use of sensitizers in children. Since they are highly irritating I would avoid their use around the eyes, e.g., trying to make the eyebrows grow back. Right now, I have only allowed my daughter to receive topical steroids. Whenever a Dermatologist has suggested the use of sensitizers, I have calmly rejected the advice. Sensitizers have best worked by giving snake oil a good reputation.

CHEMICAL IRRITANTS

“I started with my AA at about six. I really don't remember too much of what happened with my parents at the beginning. I wonder what kind of effect my baldness had on them.... I remember being taken to doctor after doctor, and those doctors had student doctors so I had everyone looking at my balding head. I remember having hair samples, skin samples, blood samples, and all the advice and meds given to my mother. There was one in particular I remember- a cream my mom use to rub into my head. It turned my head brown and felt like the worse sunburn of my life. I was in pain. I use to plead with my mom to stop the treatment but she carried on. I always resented that. How could a topical ointment that puts you in pain be good for you?”

“I used Drithocreme in several strengths when I went AU at age 34. This cream increases the metabolic activity in the area it is used. It also causes a redish 'burn' to the skin, like a sunburn. Tingles some, but not too bad. I was told that I needed to use it while my alopecia was active, so that when it became inactive, the hair would grow. I only stayed on it for 6 months and did not have the patience for smearing it on twice a day, stains on clothing and sheets. Also, a side effect was blackheads. For this I was told to use retin-a. The whole thing was to much hassle for me. One thing I would be very concerned about with a young child is ingestion of the Drithocream. I think it would be almost impossible to keep the the child from getting this stuff on her hands and then in her mouth.”

I do not have all that much experience with chemical irritants such as Anthralin (Drithocreme). Almost one hundred years ago, Raymond said that "nothing is easier to cure than alopecia areata, one only has to refer to the recent enthusiastic publication...(more b.s.)". The same thing can be seen today; there are many enthusiastic claims in the literature which do not work when applied in everyday clinical practice. Anthralin is not a new compound and its use in alopecia areata has had a long history. It was probably first applied in trials dating back to the 1930's. There was little/moderate enthusiasm regarding the efficacy of the drug until an article resurrected its use in 1979. All of a sudden a "new" clinical trial reported "cosmetically good results" in 18 of 24 patients. Follow-up reports have provided mixed results, but Anthralin still piggy back rides primarily on the result of the 1979 study. I believe that since many Dermatologists have ample experience with its use in psoriasis they feel comfortable recommending it for use in alopecia areata.

Many people say that Anthralin irritates the skin thus producing a dermatitis. However, this statement is debatable as other well known irritants (croton oil, sodium lauryl sulfate, etc.) fail to produce regrowth. Furthermore, the initial impression that the compound should be applied until the skin reddens and itches does not appear to hold up. Probably other effects besides skin irritation appear to be at play.

Avoid using it over inflammed skin areas or close to the eyes (as when trying to make eye brows grow back). Its safety during pregnancy has not been established. Avoid applying over folds and creases of the skin (they tend to hold the medication for long periods of time). Anthralin tends to stain anything coming into contact with it; hair, linen, or even your bathtub (wash with hot water after showering). Wear an old T-shirt while applying the medication and take care where you sit or your brand new couch could have an unremovable stain. Similarly, wash your hands very thoroughly after applying it. Use cold water that way your scalp won't feel that much burning. Take care (especially with kids) not to run your fingers through the hair and then rub your eyes (ouch!). Also, don't use Anthralin in combination with steroids. They have opposite actions and may theoretically cancel each other out. Anthralin stimulates the immune system with its irritation while the steroids tend to downregulate the same.

Review of the Scientific Literature:

In 1979, some of the initial studies investigating the use of anthralin in the treatment of alopecia areata were conducted in the Department of Dermatology at the University of Munich (Schmoeckel et al., 1979). The study required the investigators to produce an inflammatory, non-allergic dermatitis in 24 patients with alopecia areata and 8 with alopecia totalis. Each patient applied topical anthralin in concentrations from 0.2% to 0.8%-depending on the patients individual reaction to the anthralin. Of the 24 areata patients, 18 (75%) had cosmetically good results. Three (12.5%) had temporary results and three (12.5%) had no response to treatment. Of the 8 totalis patients, three (37.5%) had cosmetically good results, 2 (25%) had regrowth of vellus hair only. Of the three that responded well, one patient's regrowth was only temporary therefore, good results were obtained only in two (25%) of the totalis patients.

Another study using low doses of anthralin was conducted at the Wilford Hall USAF Medical Center by Dan Nelson (1985). This study suggests that the formation of a mild contact dermatitis is not enough to elicit any therapeutic response. Eleven patients were diagnosed based on clinical observations and patient history. Four of the patients underwent scalp biopsy to confirm the diagnosis of alopecia areata. Only patients with at least one patch greater than 4cm2 were allowed into the study. In this study, patients were given a topical cream consisting of 0.1% anthralin, 0.25% anthralin, 0.4% anthralin, or 0.5% anthralin. Treatment was adjusted on a daily or twice weekly basis to maintain a mild contact dermatitis. As a control, the following measures were taken: Patients with total scalp alopecia were instructed to apply the medication to one side of their scalp. Patients with multiple patches were instructed to apply the medication to selected patches. Patients with only one patch were instructed to apply the medication to one-half of the patch. Hair regrowth was evaluated at treated and controlled areas and recorded as 0-25%, 25-50%, 50-75%, and 75-100% regrowth. Of the initial 11 patients, 10 completed the study. No patient showed any difference in regrowth between the control and the treated area(s). Four patients (40%) had spontaneous regrowth that was identical in the control and treated area. Four patients (40%) had no regrowth with stable alopecia. Two (20%) patients showed expanding areas of hair loss. The investigators speculated that it is possibly the severity of the inflammatory reaction, rather than the type of reaction (allergic or non-allergic) that determines the efficacy of the treatment.

Virginia Fiedler-Weiss (1987) investigated the action of anthralin in the treatment of alopecia areata in three sub-populations of patients based on differing levels of hair loss (Group I: 0-24%, Group II: 25-74%, and Group III: 75-100%). Group I consisted of 4 patients, Group II 33 patients, and Group III 30 patients. The study included 23 males and 43 females ranging in age from 4 to 68 (mean age, 28.5 years). Again, a topical ointment of 0.5% to 1.0% anthralin was used to treat the patients. Initial dosage was 0.5% anthralin. If no regrowth was noted after 6 months of treatment, the patient could elect to increase the anthralin concentration. In Group I, One (25%) patient responded to 0.5% anthralin and one (25%) patient responded to concentrations of 0.75-1.0%. Group II had eight (24%) of the patients responding to 0.5% anthralin and ten patients (29%) responding to 0.75-1.0% anthralin. Group III had four (14%) responding to 0.5% anthralin and six (20%) responding to 0.75 -1.0%. It is clear that the higher the percentage of initial hair loss, the lower the response to treatment. The mean duration of treatment with 0.5% anthralin was 28 weeks, 24 week with 0.75% anthralin, and 19 weeks with 1.0- % anthralin. Application of medication was made daily. The mean duration of the current episode of hair loss was 3.8 years for cosmetic responders, 6.3 years for responders and 9.7 years for non-responders. There was no mention of the manner of diagnosis other than observation.

Also, Virginia Fiedler (1986) investigated the synergistic effects of applying 0.5% anthralin in conjunction with 5.0% minoxidil to patients with known resistance to multiple individual treatment modalities including minoxidil and anthralin. Diagnosis of alopecia was by observation and past medical history. Evidence suggests that the mechanism of action for each of these two drugs is different. There were 51 patients (20 men/31 women). Base line hair lose was 25-74% in 15 patients and 75-100% in 30 patients. The duration of current hair loss was from 1 to 27 years with a mean of 7 years. Patients were evaluated for hair regrowth at 4, 12, and 24 weeks. Application of medication was as follows:

In the 25-74% Base hair loss group, 67 percent had a moderate to cosmetic response. In the 75-99% base hair lose group, 31 percent showed a moderate to cosmetic response. Only 14 percent of the 100 percent base line hair loss group had a moderate to cosmetic response. The results indicate that a patients response to treatment was inversely related to initial hair lose as can be seen by the greater percentage of success with decreased base line hair lose. Cosmetic response was achieved in 11% of the 45 patients during the first 24 weeks of the study. Cosmetic responders continued receiving treatment. 80% of the cosmetic responders maintained good growth for up to 84 weeks. Patients with 75% hair loss or less were prone to have moderate to cosmetic responses. It was shown that the combined treatment was more successful than the individual drugs or the placebo. Placebo response was 14%, 0.5% anthralin-50%, 5% minoxidil-54%, and 0.5% anthralin/5.0% minoxidil combined-78%.

MY OWN THOUGHTS ABOUT THERAPY IN ALOPECIA AREATA (SPECIALLY IN CHILDREN)

“I am currently AU and have been for 4 years. I do nothing for treatment and I don't wear a wig. I won't pursue treatment till a cure is found. No PUVA, no steroids, and no waving dead chickens over my head.”

“Question: If I decided poking somebody in the eye was a cure for alopecia (if I'm lyin', I'm dyin') would many people participate in my study?

“Answer: How many times would you have to poke?! How much will Derms charge for this treatment? Can we administer the treatment to ourselves in the privacy of our own homes? If we do it to ourselves in our cars, does that mean we are "auto-poking" to relieve an autoimmune condition in an auto? (We have drive-thru everything else, so why not this.) If we scream, does that negate the treatment? If you give the right answers, sign me up!”

“Truly the middle of the road is the path to ultimate enlightenment.”

The quote is from the Dalai Lama. For me it means to look widely and live in the middle … to try to see all and understand all but to stay away from extremes.. To not shut your mind to things before you have looked at them..From the middle of the road one can see both sides! From either side of the road one can only wonder what is on the other side.

“Reviewing some medical textbooks from the previous century provides some interesting insights as to treatments. Among theur suggestions were to shave the patches frequently to stimulate hair growth, and to singe the hair the moment it appears, or that once the luxurious tresses of a young girl are cut they will never again regrow to that beauty. Anyway... useless it is, but it is entertaining, and to me a fascinating trip back in time. Sad to say physicians and patients then and now seem to be struggling for a cure for AA.”

“Parents carry around a big old bag of guilt & it seems to all spill out right as we are going to sleep. Sometimes I find myself crying in traffic wondering if I shouldn't be doing more. Or I read about the latest "cure" and feel guilty for not at least giving it a shot. There are other times, I feel as if I'm doing too much & I worry how it will affect her later in life. Most of the time is anger/frustration that I CAN'T do a darn thing about it. For the first time in her life, I can't kiss it & make it better. The helplessness is maddening.”

When you have a child with alopecia areata (AA, AT,or AU) you look after the welfare of every child with AA whether you know them or not. This may be due to maternal overprotectiveness or just the feeling that the child is helpless, completely dependent on you. This feeling makes you weigh such issues as side-effects and potential benefits differently than if you didn't have a vested interest.

When Belinda, my daughter, was first diagnosed with AA, it was a very confusing time period in our lives. My wife and myself tried to learn as much as possible about the condition. There were realms of complicated information embellished with baroque medical jargon. My wife was blaming herself because of her previous AA bout and its hereditary implications. She was very depressed and up to this day still cries whenever she listens to Randy Travis sing "Forever and Ever, Amen."

“...I'm not in love with your hair, If it all fell out, I'd love you anyway...”

I felt guilty because I was devoting a lot of my time and efforts to 1 child (right now I have four). Each one of my other children had their own problems and I was devoting proportionally less attention to them. My wife and I were irritable and snapping at each other for no apparent reason.

As I said this was a time period when my whole family was overwhelmed with anxiety and fear. It was in this context that I decided to put my faith in the hands of the clinicians. These were professionals that I had only recently met and whose qualifications were given to me by word of mouth. It didn't take me long to realize that I had made a mistake. Some of Belinda's first physicians recommended procedures that were to cause increased and unnecessary suffering. They are not taking care of her anymore.

I doubt whether most clinicians actually take the time to clarify their role in the therapeutic processs, fully explain the side effects of medications, or emphasize those side effects that are either age dependent or irreversible. The lack of proper information muddies the issue of informed consent. I never felt properly educated by Belinda's physicians to give permission for any of the procedures/medications they recommended. I would have certainly never given permission if I had known that the therapy would inflict pain, emotional and physical scars. Some therapies may cause inflammation, blistering of the skin, stunt the growth of a child, or expose him/her to a higher incidence of cutaneous malignancies. I would not have given permission for anything had I known that despite all of the suffering, available therapeutical interventions do not alter in any way her prognosis. I would have certainly denied permission if I had known that there was a monetary interest on the part of the physician to enroll my daughter in one of their pharmaceutical protocols.

Did you know that many pharmaceuticals pay a kick back to doctors for enrolling patients in their studies? This kick back may amount to hundreds or even thousands of dollars per patient. The scam continues because the attending physician may, in addition, collect money from your health insurance, or from "sponsored" lectures on behalf of the pharmaceutical. This promotes a vicious cycle by attracting prospective clients to their future studies thus enriching their own coffers. This has prompted an avid competition, especially among private institutions, to obtain patients.

Are most patients treated with contact sensitizers intervened for their benefit? Who actually gains the most by this invasive therapy? What have been the results of using contact sensitizers and other similar types of therapies from this group?

Most pharmaceutical trials conducted at present are worthless. The main aim of pharmaceuticals is to introduce THEIR OWN corticosteroid, contact sensitizer, or irritant to the market. But we already know that they do not alter the basic course of the disease. We know that after discontinuing medication there is a high relapse rate. Regardless of treatment, 25% of patients get "satisfactory" results, another 25% get some regrowth, and 50% show no response at all. Some people quote in thirds rather than quarters but the end result is the same. There is very little that differentiates any treatment from the roller coaster-like history of the condition especially if you consider that the person labelling a "satisfactory" regrowth is not you but the physician.

At present I have given up on looking to "false alarm" scientific claims regarding putative cures. I read them and examine them analitically from the perspective of a parent. I have kept my eyes open but put more faith on alternative therapies rather than "approved" medical treatments. Alternative medications may prove unsuccessful but adequately innocuous. I have only allowed the use of topical steroids on my daughter and then only conservatively- trying to avoid immunosuppression and skin atrophy. I am also exploring a cure from India sent to me by a friend who is a guru and a doctor of traditional medicine. If it works, people reading this FAQs will be the first ones to know.

Meanwhile, I have worked with my daughter on developing her self-image. She knows that she is special, beautiful, intelligent and very talented. She does not live in anxious anticipation of growing bald, does not self-blame for her alopecia or ruminate on why she is different. She, in fact, accepts that she is different but only for the better.

IS A BIOPSY NECESSARY TO MAKE THE DIAGNOSIS OF ALOPECIA AREATA?

Skin biopsies under appropriate circumstances may provide a wealth of information. It is necessary when diagnosing tumors, vasculitides, etc. However, these conditions pose a different scenario to alopecia areata where the diagnosis is based on clinical grounds. I would entertain performing a biopsy in a patient if the clinical symptoms are not characteristic, for e.g., if hair loss occurs in a reticular or diffuse pattern. I would also consider a biopsy if faced with a therapeutical decision. If the biopsy shows a lot of inflammation, steroids are indicated. On the other hand, if the biopsy shows scar tissue then there is no indication for the use of steroids. Otherwise, biopsies are used primarily for research protocols and pharmaceutical trials. If the doctor does the biopsy to rule out lupus, I would change doctors. This is not a valid reason to perform a biopsy.

If your doctor decides on obtaining a biopsy for valid reasons then both the timing and the site may be all important. There is nothing to be learned from a biopsy of a lesion that is resolving or chronic. In longstanding lesions the intensity of inflammation very slowly decreases and fewer lymphocytes, macrophages, and Langerhan's cells are found around affected hair follicles. The cells are still there in numbers greater than we would normally expect for people without AA but it is as if the immune system has decided that once it gained territory in the initial battle it retreats leaving behind a skeleton crew to maintain control. It may be that the hair follicles gradually become less active over the long term and so become less stimulating to the immune system.

The site of the biopsy is also important, because it should be representative and illustrative of the pathology. In my limited experience, usually the border of an active patch will show more inflammatory cells than at the center.

The biopsy is performed with a punch needle that works the same as a cookie cutter. The overall biopsy measures somewhere between 2 and 6 mm. The site is anesthesized and cleaned. I have had sixteen done on my scalp and have never felt anything. The first one I did on my forearm (showing a patient the procedure) left a stinging sensation for about 10 days and a pinkish discoloration. Two of our patients have had side-effects due to bleeding. We tried pressure for a while but as soon as the gauze was removed a couple of drops fell to the patients' dresses.

MISCELLANEOUS QUESTIONS

Is there a correlation between alopecia and cataracts?

I am not aware that such a correlation exists for alopecia areata per se. Opacification of the lens may be seen, however, in therapies and conditions related to AA. Involutional cataracts are commonly seen after chronic exposure to UV radiation. That is why the doctor protects your eyes while receiving this type of radiation therapy. Cataracts are also observed in diabetes mellitus, an autoimmune disorder associated to AA. The only positive aspect about this association is that the cataracts may be reversible with correction of the diabetes. Also, cataracts are well known as a side effect of prolonged therapy with topical, oral, or injected corticosteroids. Posterior or anterior lens opacification have similarly been noted in 50% of patients with atopic personalities. Cataracts in atopic (allergic) individuals have been noted as early as in adolescence (usually those with severe skin disease). In these cases there is usually no correlation between the presence of cataracts and other clinical parameters of atopy. At present routine ophthalmological examination is not part of the screening procedure of patients with alopecia areata.

Is there a possible association between alopecia and chronic conjunctivitis?

Redness of the eye may be the result of chronic irritation rather than infection. Lack of eyelashes prevents the filtering effect of dust settling on your eyes. Eyelashes are seemingly beneficial in filtering the sun's glare. If this is the cause of the irritation, wear sunglasses.

A few of my patients have had chronic conjunctivits but I am not sure that this is enough for an association. In the cases that I have seen a diagnosis of seborrhea has been made. When it affects the eyes it usually starts in the eyelids producing irritation, burning and itching. The eyes are "red-rimmed" and you can easily observe a yellowish crust along the lid margin and around the lashes. The irritation soon spreads to the conjunctiva due to the presence of some yellowish crusts. If this is the case, scales can be removed on a daily basis with a cotton applicator and baby shampoo. If it persists an ophthalmologist can prescribe topical medications like Blephamide.

Seborrheic blepharitis and chronic conjunctivitis are usually worsened by low temperature and low humidity. It usually coexists with other manifestations of the systemic illness, e.g. scales primarily in areas where moisture is easily trapped such as behind the ears. Several members of the group complained of itchiness and redness in their scalp- seborrhea may be the culprit. Incidentally, seborrhea itself may be associated to hair loss.

Of related interest is a recent article by Fulk et al. (Optom Vis Sci 73(12):742-745, December 1996) showing excessive numbers of the mite, Demodex folliculorum, in the eyelash follicles. The article concluded that Demodex is an important cause of ocular itching and that treatment with pilocarpine gel can alleviate the itching by reducing the number of mites.

Is there a possible association between the steroid injections and menstrual bleeding?

“I have received 3 sessions of injections. The derm did not say what they were exactly except that the first 2 were 2-3 mg and after the second did nothing he increased it to 10. I had no side effects the first 2 times. Since the third time, about 6 weeks ago, I have experienced menstrual bleeding with only a weeks break between each week of bleeding. The last time lasted over 10 days and I am now on low dose estrogen which has stopped it. Is there a possible association between the steroid injections and menstrual bleeding?”

For some people the corticostroid injections themselves can be quite painful and may promote a stress type of reponse. Steroids comprise part of the stress cascade and could have promoted the same if absorbed systemically after the dermal injections. Stress per se is related to menstrual irregularities which may result from the combined effects of steroids on the levels of luteinizing hormone (which controls ovulation), estrogen, progesterone, and even androgens. At different ends of the spectrum it is not unusual to find a female engaged in strenuous physical activity who misses her period or one who has an abnormal pattern of bleeding when a close relative or spouse dies. Steroid injections, if absorbed systemically, can recreate those circumstances. I am not sure how frequent this response may be, but approximately 60% of patients who endogenously overproduce glucocorticoids experience menstrual irregularities. More common features of this excess include weight gain, hypertension, hirsutism, and glucose intolerance (i.e., a diabetic type of response to sugar).

What are the effects of hormones on hair growth?

Animal studies and different human disease patterns have shown a number of ways in which hormones may affect hair growth, including (taken from Speroff L, Glass RH, Kase NG. Clinical Gynecologic Endocrinology and Infertility, Williams and Wilkins, ch 14, 1994),

  1. Androgens, such as testosterone, initiate the growth and increase the pigmentation of sexual hair (i.e., that hair that responds to sex steroids). The end result is larger, longer, and more pigmented hair in the face, lower abdomen, anterior thighs, chest, breasts, axillae, and pubic region.
  2. Estrogens have the opposite action to androgens causing a retardation in the rate and initiation of growth of sexual hair. The end result is finer, less pigmented and slower growing hair.
  3. Progestin or progesterone (i.e., the hormone that prepares the uterus for the reception of the fertilized ovum) have minimal direct effects on hair.
  4. Pregnancy (a state characterized by high levels of both estrogen and progesterone) can synchronize hair growth leading to periods of either growth or shedding. When progesterone increases the anagen (growth phase) of the hair cycle, some regrowth may be noted. But (there is always a but!) approximately 3 months after the baby is born, the hair that should have fallen out during pregnancy and didn't PLUS the normal hair loss will fall out together causing postpartum alopecia. The hair will, however, grow back to pre-pregnancy amounts
  5. The effect of other endocrine problems is less clear. In hypopituitarism hair growth is diminished while hypothyroid individuals display less axillary and pubic hair.
  6. According to the PDR (Physician Desk reference):

    The following adverse reactions have been reported in patients receiving oral contraceptives and are believed to be drug-related:

    • mental depression
    • vaginal candidiasis
    • rash (allergic)

    The following adverse reactions have been reported in users of oral contraceptives and the association has been neither confirmed or refuted:

    • loss of scalp hair
    • colitis

A word of caution:

  1. Oral contraceptives are contraindicated in women over 35 years of age who smoke or have a history of hypertension, diabetes, liver disease, or cancer.
  2. Women taking supplemental estrogen should be screened frequently for endometrial adenocarcinoma.

You may find more information on hormones from a couple of books writen for the layman:

  1. Screaming To Be Heard--Hormonal Connections Women Suspect and Doctors Ignore by Elizabeth Lee Vliet, M. D.
  2. What Your Doctor May Not Tell You About Menopause, by John R. Lee, M.D.
  3. Listening To Your Hormones, From PMS to Menopause, Every Woman's Complete Guide by Gillian Ford,the author of The Breast Book

Each book has a different and yet similar message. Each book also has a significant section on the thyroid.

Do people develop a tolerance to antidepressants?

“I've been told by some that the physician will probably increase my medication. I don't know if I want to go that route or not. I would really like to be able to fight the depression on my own. What good is it to have to keep increasing the antidepressants? What if a person reaches a point where it can't be increased anymore?”

Antidepressants are not habituating. No one can develop a tolerance to them, necessitating the ongoing raising of same. Rather, it sounds as if the antidepressants simply needs to be titrated up to its proper clinical dosage where one achieves the most benefit. Another possibility is to look at another more effective antidepressant such as Serzone, Zoloft or Effexor.

Is there a connection to AA with the overabundance of Candida albicans (yeast infection) in the body which negatively impinges on the immune system?

Patients receiving cortisone shots may have an exacerbation of their Candida problem. Unfortunately, other treatments for these patients may be less effective. There was a recent article by Boni et al, “Alopecia areata in a patient with candidiasis-endocrinoopathy syndrome: unsuccessful treatment trial with diphenylcyclopropenone,” Dermatology 191(1):68-71, 1995. The abstract relates that chronic candidiasis of the skin along with endocrine dysfunction is a problem that evolves from an impairment of cellular immunity. According to the authors, the lack of success with diphenylcyclopropenone was due to the chronicity of the alopecia and a delayed hypersensitivity response to the drug. See also autoimmune polyglandular syndrome.

Of equal and related importance to alopecia is the following yeast story:

NOTED DOUGH BOY DIES

Veteran Pillsbury spokesman Pop N. Fresh died Wednesday of a severe yeast infection, he was 71. He was buried Friday in one of the biggest funerals in years. Dozens of celebrities turned out including Mrs. Butterworth, the California Raisins, Hungry Jack, Betty Crocker, and the Hostess Twinkies The graveside was piled high with flours, as longtime friend Aunt Jemima delivered the eulogy, describing Fresh as a man who "never knew he was kneaded."

Fresh rose quickly in show business, but his later life was filled with turnovers. He was not considered a smart cookie, and wasted much of his dough on half-baked schemes. Still, even as a crusty old man, he was a roll model to millions. Fresh is survived by his second wife. They had two children, and one in the oven.....

Could lack of hair early on in childhood be a predictor of severity in alopecia areata?

This has not been my experience. If anything my daughter who now has AA was born with too much hair. However, this is a personal bias and I have not read anything in the literature in this regard.

Is there a seasonal component to hair loss in alopecia areata?

“I did have quite a bit of hair return last summer and then lost a good deal of it during the fall.”

“[My 10 year old son] still experiences hair loss but it is only in the fall and to date he now only has 3 small areas of hair loss which is hidden by the hair he does have.”

“In general, [my daughter's] greatest time of loss has been the Fall and her greatest time of growth has been the Spring/Summer. She's like a beautiful flower.”

“I'm a 17 year old male who has lived with hair loss since about 1st grade. During the past 3 years it has come and gone. For almost a year and a half, I had a good amount of hair on my head (from about an inch above my ears all the way around). I wear a cap all the time, and have noticed that there is a very full growth patch were the whole is at the back of the cap (were you snap it together). In the first year I experienced regrowth (3 years ago), it grew well in the summer but fell out in the winter. The next year it came in after winter, and had stayed in up to this winter when started to fall out in patches. It doesn't grow very heavy or "thick" in the areas where it does grow, but there is still hair there.”

Other patient's comments:

  1. “… it thins out in the fall and winter then I see more regrowth like now in the spring and summer.”
  2. “I too am experiencing quite a bit of fine white hair regrowth now, but in the past it has fallen out in the fall and winter.”
  3. “The only treatment that seems to work is the cheapest treatment I've found... the sun. Every summer and early fall I experience significant regrowth; however, late every fall, winter and spring most regrowth magically vanishes.”
  4. “During the summers that I am able to spend large amounts of time in the sun is when I see the most significant regrowth. I have very fair skin, but tan quite well and I make sure that I don't burn. The problem is that during the winter the positive growth always reverses (at least for me).”
  5. “My 2 year-old daughter has been totalis since Aug. In asking around about other kids with it, we ran into a family with a boy that lost his hair in Sep, started growing it back after about 6 months and had it all back after about 10 months. Then it started to fall out again about the same time of year again (Sep). I currently don't know of his present condition, but his parents were convinced that it had something to do with the seasons.”

Although to my knowledge this observation has not been the object of scientific study, there are several theoretical reasons which could explain such a seasonal variation:

First of all, solar radiation spans the ultraviolet (UV) spectrum (see PUVA therapy elsewhere in this document). Classically, UV has been used clinically in combination with chemical compounds called psoralens as an effective mode of therapy for certain dermatological conditions. It is believed that this sort of therapy induces changes in certain inflammatory cells (lymphocytes) and other similar elements (Langerhans cells) that work in immune surveillance. It is not surprising that these same cellular elements have been implicated in the pathogenesis of alopecia areata. Comments by one of our members may be illustrative of the effects of UV radiation and its possible analogy to PUVA therapy:

“I must admit to foolishly acquiring sunburn on 2 occassions. The first happened when digging a fence post early in April. I guess I didn't think it was "hot" enough. After a short period of time my winter-white scalp was quickly red. Within a few minutes of going inside, I started to blister and decided a trip to the ER was in order. After being admonished by the Dr., who said after 15 years with alopecia I should have known better, I was given a prescription for Lidex and sent home. The worst part was trying to get my wig on the next day for work over the blisters, ointment and gauze. A month later, after peeling twice, my head was covered with a 1/8" of fuzz that was coming in brown. This was my first regrowth ever. I burned again the next year in Mexico, but not nearly as bad. Again, I had re-growth that fell out after two months.”

Second, there is a cyclical nature to the growth of hair. Human hair grows maximally during spring and early summer, especially in temperate climates. This is reflected microscopically by hairs entering their resting stage (telogen) during the months of September through December (dang those Christmas photos, I hate 'em!). These cyclical changes are probably derived from an inherited evolutionary measure by which animals grew a winter (fur) coat for protection.

Are there animal models for alopecia areata?

There have been confirmed reports of alopecia areata-like hair loss in; Rats, Mice, Dogs (Magyar Vizsla, Minature poodle, Dachshund, Bernese Mountain, Doberman Pinscher, German Shepherd, Mixed breed), Cats (Siamese), Horses (Appaloosa, Palomino), Cattle (Holstein), and Non-human primates (Stump-tailed macaques, white-fronted capuchin, Spider monkey, Chimpanzee). Most reports are just one or two isolated cases. As with human AA, the hair loss waxes and wanes, has an inflammatory infiltrate in and around hair follicles, and hair loss is reversible. At present there are two animal models being used for research into alopecia areata, one is in rats and the other in mice.

Are there any historical records of this? And were alopecia people persecuted? Maybe they were accused of being some or another evil entity...?

The first extensive and clear description of AA (ophiasis type) came from Cornelius Celsus in 30AD - although he was probably expanding on books from even earlier. A little article on "alopecia areata and moral judgment in the history of art" (G Borroni, American Journal of Dermatopathology, 1992; 14: 170-173) suggested that representations of AA in the history of art are so rare because the condition was seen in such a negative light and that it was regarded as a punishment by the devil. He only came up with 3 paintings that were clearly of people with AA:

So it would seem you are right. AA has not been viewed in a positive light for several centuries.

Maybe you have also noticed paintings of Mona Lisa, Catherine the Great, and Elizabeth the 1st without eyebrows. Furthermore, Elizabeth the 1st is usually depicted as having no eyelashes either. Although I always believed that it may have been a fashion statement, now I wonder, hmmm.... Were they really AA or AT? Another possibility is that syphilis running rampant at the time could have accounted for the hair loss. As for modern art, Carolyn Speranza incorporates photos of her AA patches into her web media art. Robert Maplethorpe, who died from AIDS, pictured men with alopecia in his artwork.

Are there racial variations in the expression of alopecia areata?

Epidemiological studies do show that there are certain nidus within given populations that exhibit a different prevalence for the condition. One such study, performed almost four decades ago, reported that Japanese people living in Hawaii had a higher prevalence for the condition that the indigenous population. Still, despite any differences in either incidence or prevalence, alopecia areata has been described in all races. Variations, if any, have been reported in the expression of the condition. Thus, according to a recent article (TA Laude Seminars in Dermatology 14:15-20, 1995) the expression of alopecia areata varies in appearance but not incidence in black children. Dr. Laude believes that alopecia areata tends to be severe in black children with a higher proportion of cases presenting as totalis or universalis. Furthermore, therapy with Anthralin is hampered by the fact that black children have a higher threshold for erythema and irritation.

My alopecia (AA) seems to increase in severity in the postpartum period. Is there a correlation?

There is primarily anecdotal experience of cases where the alopecia has increased, decreased, or remained the same during pregnancy. There are a large number of proteins and hormones associated with pregnancy. Some of them come from the developing fetus, others from the placenta and others from the mother. Among these are included hypothalamic-hormones, pituitary hormones, growth factors, cytokines, opiates, etc. Progesterone itself is produced initially by the corpus luteum until about 10 weeks of gestation and later on by the placenta. Although it has been claimed that progesteron has minimal effect on hair growth, I have always been intrigued by its potential (albeit indirect) role during pregancy. You see, some people believe that progesterone is important in suppresing the immunological response to fetal antigens. In a large leap of faith, a rise in progesterone might therefore prevent the immunological reaction against hair in a patient with alopecia areata. Estrogens are also increased during pregnancy. Estrogens have caused a retardation in the rate and initiation of growth of sexual hair. The end result is finer, less pigmented and slower growing hair.

After delivery, hair loss is not uncommon but usually associated to non-alopecia areata conditions. The most common of these is called “telogen effluvium” (see also anagen). The term referes to changes in the hair cycle of an individual. In the normal hair cycle the large majority of follicles are in a stage of growth, only a minority enter a resting stage called telogen. For some reason stressors may synchronize the hair cycle in such a way that a larger than normal portion of hairs enter the telogen phase. The end result is thinning of hair. These stressors include difficult childbirth (especially if long and strenuous), a surgical operation, crash dieting, etc. In the case of childbirth, the insult may be the result (here I am theorizing) of decresing levels of progesterone. The reduced levels propitiate the production of the adrenal cortical steroid, androstenedione, which has some androgenic (male-like) properties.

Unless the stressor in telogen effluvium is repeated hair regrowth tends to be complete. Only if your postpartum hair loss is severe and recurs after repeated pregnancies will hair regrowth be irreversible.

… however, it is a well known fact that for guys getting someone pregnant the end result may be a major bout of hair loss.

Speaking of pregnancy:

An expecting couple went to the hospital when the wife started labor. In the delivery room, the doctor told them there was a new device designed to ease the birthing process. He said, "It transfers half the pain to the father."

"Great!" cheered the wife. "Great", moaned the husband. As the wife began to give birth, the doctor turned the machine on.

The husband said, "Geez, I hardly feel a thing! Go ahead and give me ALL the pain!" So the doctor cranked it up to full.

Since there was almost no pain, the new family was able to go home the same day.

Everything was fine until they pulled into the driveway and found the mailman dead on the front porch.

Regardless of any scientific evidence I will probably have to conclude this section by saying that regardless of whether you have alopecia universalis, a large number of preganancies would have made you pull out your hair anyway.

Is there an association between alopecia areata and Down's syndrome?

At least two series have found a higher (6 and 8.9%) than normal prevalence of alopecia areata in patients with Down's syndrome. It is believed that this association is the result of patients with trisomy 21 being more suceptible to dysregulation of their immune system.

Are there some medications that actually cause hair loss?

“So why does my pill book say that antianxiety medications cause hair loss? The hairloss they mention is not alopecia, it is extra hair in your brush. Like when women are pregnant, sometimes they lose more hair than normal and sometimes their hair grows like crazy. It does not mean patches of hair fall out.”

Among the industrial chemicals causing a reversible type of alopecia are potassium thiocyanate (used for hypertension), trimethadione (used for epilepsy), bismuth, and cyclic condensation poducts of monomeric chloroprene (during the manufacture of rubber).

Chemotherapeutic agents are well known for the induction of diffuse hair loss (anagen arrest) while anticontraceptive drugs and anticoagulants may induce telogen effluvium (see section on differential diagnosis of baldness). The antithyroid medications carbimazole and thiouracil may also promote hair loss. There are in addition many anecdotal and often unsubstantiated accounts relating certain drugs to alopecia. Although the scalp is the primary site affected, hair loss of the eyebrows, axillary, and pubic region have also been reported. Some of these drugs include:

Are there medications that promote hair growth?

Thickening, elongation, and increased pigmentation of vellous hairs has been observed after the chronic administration of certain drugs including hydantoin, diazoxide, minoxidil, streptomycin, penicillamine, and psoralen. Of these, Minoxidil, is the only drug currently approved for the treatment of androgenetic type alopecia. Androgens (male hormones), progesterone, contraceptives, ACTH, and glucocorticosteroids stimulate the growth of hair in areas where hair is usually present in men.

How do I take care of my skin?

Dry, rough, scaly skin is a problem of many patients with alopecia areata. The dried skin (also known as xerosis) promotes itching which is often reported worse at night and during the winter season (winter itch). The dried skin provides for burroughs among the cells and a defect in the protective function of the skin. Chemicals (irritants) and even infectious agents can then get access through the cracks and procreate more inflammation and itching. Treatment is based on enhancing good skin care techniques, using moisturizers and in severe cases using corticosteroids. Some general guidelines for good skin care include taking short (less than 5 minutes) lukewarm showers. Use a mild superfatted soap. If taking a tub bath, use lukewarm water and add bath oil (be careful because the oil will make the bathtub slippery). Pat dry your skin and then while it is still damp, apply moisturizer. Do not dress until the moisturizer has had time to be absorbed. Avoid exposure to the sun, saunas, whirlpools, etc. During the winter months a good humidifier linked to the furnace may help immensely. If using creams and oils it may be best to apply them early on in the day. Putting them on right before bed is an invitation to scratch and itch (see "Itching" under Other Problems to consider) all night.

Why do patients keep seeing physcians and attempting radical treatments that could even endanger their health?

“When I first developed this, I never had any hair loss before and didn't know anyone else with this. My derm turned me onto NAAF and the support groups, and when I first went to a meeting, I showed up guns a'blazing, ready to travel to the ends of the earth, spend every last dime, to find a cure or a successful treatment, and I couldn't believe how others who have had this for longer could just sit there and calmly talk about wigs and make-up. I subsequently learned that they had been through my gung ho stage already and had reached acceptance.”

Some of the medical interventions by one of our participants included; cortisone injections, prednisone, cortisone cream, PUVA, minoxidil, anthralin cream..... and among many others, DPCP. Another member of the list server just expressed his battle with alopecia.... He had a tug of war between hair loss and cortisone injections (with hair on the loosing side). Our member would and sit in the physician's ofice, the Dermatologist would walk in, inject the steroid, and then walk out and not exchange a single word. This was an accurate rendition of the patient's last visit. The anger of being taken for a "fool" fueled enough courage to make him leave the care of this particular physician. Again it seems to me that either,

  1. The patient is desperate (yes, very desperate), and maybe doesn't know better. He or she just wants the hair back.

    This is probably quite common in the acute stage of the condition where you are forced to rely on the opinion of another person for an informed consent.

  2. The patient has a low self-esteem and is an easy prey for an abusive relationship. I talk about "abuse" because the end result in some patients, with scars and skin atrophy in their scalp and eyebrows, can only be described as physical abuse.

    The literature of sexual abuse and revictimization is full of similar examples. In some of our cases the victim had to work their way up to LOW self-esteem from NO self-esteem. At least acutely, self-esteem goes down the drain along with the falling hair.

  3. The patient has developed a maladaptive attribution regarding his condition. Especially in children this may be the case, as one often learns from role models (parents). If they were desperately seeking advise and changing physcians constantly (looking for the magic cure), the children may end up internalizing the wrong implication.
  4. The patient has depression. Altered mood states sometimes overwhelm the affected individual. Some of the manifestations of depression include diminished concentration, irritability, low mood, decreased motivation, a feeling of hopelessness, self-destructive behavior, appetite and sleep changes, etc. The symptoms themselves may make depression worse (a positive feedback loop), e.g., irritability leads to worsened interpersonal relations, low mood leads to lowered self esteem, etc. A depressed child becomes a teasing magnet, a depressed adult becomes a social porcupine.

    Defining an interest often makes a depressed individual feel better. However, there are both positive (constructive) and negative (destructive) interests that the person may pursue. A negative one, that occurs quite commonly, is that if you are good at screwing up you will continue doing that over and over again. If you are good at being abused (and even attracting some recognition because of it) you will continue doing it. The main message regarding therapy would be to interrupt a cycle of failures with a cycle of successes. As I have already stated, you need to separate causality from autonomy. You didn't cause the abuse but you are certainly able to stop it. Define your skills, strengths and areas of differences. Identify comorbid difficulties (e.g., anxiety, substance abuse, etc.). Expect some good days to be followed by bad days, what I call the, "Oh sh_t!" reaction. You think you are doing better and then you fall back into the depression, "Oh sh_t!." This, believe it or not, is a coping mechanism called anticipation. Talk about your problems with other people (like in this list server). If anything, you always have control over your voice. When people tell their stories they gain a measure of control over their problem. They are able to define the narrative and its parameters and to put things in perspective. Think of your depression in terms of a metaphor. Depression is like a person choking you. Feel his hands around your throat. Now think of distancing yourself from this person. Sitting across the room from him and talking to him about this problem. Work things out. Other people think of depression as having the floor they were walkin as caving in. If this is the case, think of your therapist, your medications, or your talking to us in this list server, as a way of strengthening that floor.

    Just remember that depression is usually not a simple single problem. It is a complex problem that can be simplified in different stages. In a certain way we try to go from depression, to sadness, to normal mood, in stages. Take one day at a time. Depression is not a failure but a temporary inability. The best weapons against this temporary inability are knowledge and the fact that many other people are out there to help you. If you overcome depression (or self esteem problems) you have learned a lot about yourself- you have grown considerably.

Note: A license to practice medicine is a priviledge that suffuses the patient's rights to knowledge with a number of other responsibilties. "Do no harm" is the first rule of medicine. Sometimes relief can be brought by truth and compassion rather than invasive interventions. It's not right that going to a doctor is a "buyer beware" situation. Bad doctors devalue good ones. Let me conclude from a qupte of one of our participants:

“What a relief it was for me, to stop all treatments! The best part of that decision was moving past the "there has to be a cure out there somewhere and I'll find it if it's the last thing I do!!" stage and into the "how can I make my life better by focusing on the things I can control?" phase.”

Does anybody knows the statistics that would tell me what are the chances of passing along alopecia to my kids?

The risk of someone with AA having a child with AA is actually very low to non-existent. The risk is not more than 4% when looking at the statistical analyses in a variety of published reports. Some reports suggest the risk is no greater than the life time risk for the general population (1.7%). Having AU apparently presents no greater or lesser risk of transfer than someone with patchy AA.

I suspect there are multiple susceptibility genes for AA, different combinations of which may be found in different people with AA. However, it is clear that having susceptibility genes is not always enough for overt disease to develop. There are probably environmental trigger factors interacting with susceptibility genes to promote onset of AA.

If you do have genes for AA susceptibility it is possible you will not pass all of them on to your child plus your child may not receive an appropriate environmental stimuli for AA onset. Your husband's genes may also mask any potential susceptibility genes. With all these possible interactions and for so many factors to come together at the same time in one individual it is not suprising that the risk of passing AA from parent to child is so low to be effectively non-existent.

Do patients with alopecia areata have a problem with sweating?

“Dogs sweat, men perspire, women feel the heat, but Southern ladies glow.”

As a group, patients with alopecia areata have a decreased number of sweat glands.- Some sweat glands are attached to the hair follicles. When the inflammatory reaction hits the base of the hair follicle it simultaneously affects the sweat glands in a case of mistaken identity.- From what I have read, the degree of sweat gland dysfuntion is not correlated to extent of hair loss, therapy or presence of concurrent diseases. This line of thinking once propelled me into asking the members of our list server whether they had ever experienced heat intolerance or even noticeable lack of perspiration. Oddly enough all members that responded to my query said that they perspired more AFTER the developing AA. Some even pointed out that they had a distinct odor to the sweat that wasn't there before.

After the cortisone shots, I broke out in a henious case of acne. I've never had acne problems before. Is this a common reaction?

Steroidal acne usually comes in the form of a wave—abruptly and overwhelming. It is characterized by inflammed pustules, all at the same stage of development, some 2 weeks or more afer beginning steroidal usage. It is uncommon in children and frequent in adults but with decreasing frequency after age 50. Lesions resolve slowly after discontinuing steroids. Besides discontinuing the medication some physicians prescribe tetracycline and/or vitamin A for treatment. Although the condition is non-scarring, the affected area may change in pigmentation.

I heard of a man letting a cow lick his head because he swore it would grow his hair! Any truth to the story?

Would you believe this old country tale has an element of truth? Cattle saliva has been analyzed and found low levels of the cytokine epidermal growth factor. This chemical has some growth promoting potential for hair follicles affected by androgenetic alopecia. (Now all we need to do is work out how to bottle this stuff, set up a web site and we're in business!)

Ref. Kligman, Freeman. History of baldness. From magic to medicine. Clin Dermatol 1988; 6: 83-88.

I think they also found a higher concentration of estrogen/progesterone in the cow saliva due to the farmers feeding them the hormones to increase milk yield. This treatment has also been used with varying success rates with androgenic hair loss (topical female hormone treatment, not cow saliva!).

When Belinda (my daughter) lost her hair, a guru friend from India recommended an intervention. I followed her advise because she was a friend of mine and the herbs were provided to me free of charge. Looking back at the whole ordeal I think that what I rubbed in Belinda's scalp for a year and a half was a mixture of petrified cow dung and powdered elephant tusks disolved in goat milk previously mixed over an "aromatic" stone. Maybe I erred by using the wrong end of the cow! (Sorry, couldn't resist).

There have also been tales of hen feces being used to regrow hair. Since the hens are often fed with a multitude of hormones to increase egg output, there seems to be a bit of logic in this 'treatment' as well ... it leaves a different impression though when you hear "a little dab'll do it"!

OF GENERAL INTEREST

Famous alopecians

Bob Samuelson of the USA Olympic Volleyball team is the perfect example of how alopecia does not affect your health. Unfortunately, not everybody may remember his shaving other teammates' heads at Barcelona, but other alopecics may still retain their high profiles. In 1961 when Roger Marris was in the race to surpass the home run record of Babe Ruth, he felt terrible pressure mized with misery at the prospect of dethroning the Babe. As a consequence some people believe that Roger's hair started falling out in clumps. Mark Murphy a former player with the Green Bay Packers has alopecia universalis. He has done some regional television spots to promote a better understanding of alopecia. His message is primarily directed to kids with the condition. Another athlete affected was Drago a native Brasilian who played soccer with the Baltimore Spirit and helped establish the first support group in that city.

Remember the first Star Trek movie which featured a shaved Petris Kihambatta? Many women went to salons to copy the look. How about Huphrey Bogart? A book by Lauren Bacal (entitled "By Myself") about the filming of "The Treasure of Sierra Madre" said that Humphrey Bogart lost all of his hair and took B-12 injections which seemed to work. Mike Nichols a famous director (married to Diane Sawyer), Stephen Covey (speaker and author), Ben Kingsley, Yul Brynner, Patrick Stewart (aka Jean Luc Picard) and Telly Savalas are other famous alopecics (albeit not necessarily AA). In the UK it is well known that Queen Elizabeth I suffered from hair loss (androgenetic alopecia), while more recently, Duncan Goodhew, who won a gold medal at the Olympic Games (swimming), is now one of the patrons for Hairline International (UK's alopecia patient society). Stacianna Stitts was the featured athlete on "The Worst Day I Ever Had" page of the Sports Illustrated for Kids Mag (June 1999 issue). Stacianna is a swimmer with alopecia. The Swedish fashion model Jenny O has AU. She believes her condition accounts, in part, for her strength. The AU certainly hasn't hampered her carreer as she glides across the stage while charging fees of $2,000 per day. A biography of The Marx Brothers' mentiones that their great comedic foil, Margaret Dumont, had alopecia universalis. Her first costarring role with the brothers was in 1929 "The Coconuts" and she is in all of their great films from the thirties. She always played a variation of the same role-- a rich society woman who has to put up with the Marx Borthers' lunacy.

My favorite story about a famous alopecian came from an article by John Gleason which appeared in the Golf Journal:

“Shortly after the great Economic Depression of 1893, and due to stressful effects from serious business decline, Rockefeller (John D.) fell victim to ill health. He was stricken with a disorder diagnosed as alopecia, and by 1901 he was totally bald and had lost his handsome mustache.

“Turning to his longtime Cleveland physician and personal confidant, Dr. Hamilton Fisk Bigger, Rockefeller worked himself back into a healthy recovery. One of the suggestions was for John D. to learn to play golf. He agreed, but there was one stipulation: The good doctor had to learn to play golf with him.”

Being a physician and having taken golf as a hobby makes me ponder on the wisdom of Dr. Hamilton (if only I could convince my wife).

An article in the May 1998 issue of Vanity Fair offers an excerpt from a new biography of John D. Rockefeller Sr., called "Titan (Ron Chernow is the author):

“Making matters worse was a devastating personal blow in 1901: a total loss of body hair, a malady known as generalized alopecia. Within months, he was transmogrified from a handsome, rather youthful-looking man into a hairless ghoul.”

Later in the article, Chernow writes sensitively of Rockefeller's reaction to journalist Ida Tarbell's (by the way, an extraordinary woman of the 19th century) description of him as "hideous and diseased." Chernow writes that Rockefeller was deeply pained "that Tarbell converted his alopecia, which had produced so much suffering, into a sign of moral turpitude."

Regardless of any character flaws, Rockefeller was envied by many people. Derogatory comments revealed the flaws of the persons professing them rather than Rockefeller'e medical condition. As F. Scott Fitzgerald once said, "The rich are different from the rest of us. They have more money."

A recent spin-off from the naturalistic approach stems from Princess Caroline of Monaco's plight with alopecia. According to The Times of London dated September 13th, 1996; "Time to end the rumours surrounding Princess Caroline of Monaco's shaven head. It is not the result of chemotherapy or any punk leanings. According to close friends, the explanation is alopecia, a scalp condition remedied by plenty of fresh air and sunshine on the bare head." The news about Caroline of Monaco loosing her hair also appeared in People magazine (Septemeber, 1996). I was particularly offended by the way the newsmedia has treated her, "Caroline plays a skinhead!" by France-Soir or London's tabloid The Sun, "She looks more like a concentration camp victim than the women widely regarded as one of the world's most beautiful". Well, the fact that she went in public with only a turban while the boorish paparazzi were analyzing her through magnifying lenses clearly shows how her inner fortitude and strength of character have far surpased any external esthetical landmarks. I can only stand in awe of this woman's beauty now more than ever. This woman who stands as mysterious as Queen Nefertiti and who defies convention is beautiful indeed.

Other famous alopeciacs:

Neve Campbell (who starred in the movie Scream and its sequel and is on the TV show Party of Five) said the following on Rolling Stone magazine:

“My hair is falling out. Not in vast quantities. But every once and awhile I just get a random bald spot on the top of my head, and people go, 'Uh, Neve, maybe you need to go to the doctor again.' I go to the doctor, and he puts about 20 needles in my head, and I leave and the hair grows back, until the next time.”

She said all this after talking about stress.

A biographical sketch on Richard Lionhear mentions that he lost all of his hair and his fingernails at the same time. They didn't mention whether his hair ever came back. I have to wonder whether all of those statues of him with beard and hair are a real depiction or just wishful thinking.

Lunchtime observation…

The March issue of US Vogue features a layout and article on VH-1's new model of the year, Karen Elson. The article talks about her big break when a famous photographer revamped her look, including SHAVING HER EYEBROWS because "her face didn't need them." In her current pics her brows are still very light and thin, heavily contributing to her overall "look."

This is the second supermodel who's rise to fame has been directly aided by her browlessness (the first being Kristen McNemeny).

This is one fashion trend I'm kinda liking!

Somewhat unrelated

In the science-fiction series called Babylon 5 there are aliens called Minbari who are all bald, both men and women! They also wear a bony ring around their bald heads and apear to be an advanced and intelligent species.

There is a "wig scene" in the movie "Marvin's Room". Without giving the plot away for those that haven't seen it, it concerns a leukemia patient who has to take off her wig in front of a family member who had never seen her without it. It was a very sad moment. The movie may remind many of us how lucky we are not having to deal with something like cancer.

I have heard of used very often the phrase that some people lose their hair because they are more highly evolved, but is there any evidence to support this? An alternate Darwinian explanation may be that people lost hair as they started wearing clothes. I am not sure whether fossil records could actually provide a way of tracing hair from our ancestor, but if this was possible, we could correlate hair with sewing utensils. Of course, this doesn't explain why aliens lack hair (Chewbacca being, of course, an exception).

Maybe aliens are portrayed on TV as being hairless because those latex costumes are cheaper to make than "hairy" costumes, and green looks so much better on shiny skin than on a hairy costume??!? (they'd all look like Sesame Street characters in green fur!) ;) (Chewbacca being the exception, because Mr. Lucas can afford the hairy costumes!)

To wig? or not to wig? That is the question … for job interviews

“I was preparing to fax my resume to a local museum which is looking for a part-time/minimum wage I'm-not-yet-sure- what (but I'm going to find out because working in a library or museum is my idea of a good deal). And I found myself wondering about telling them by telephone that I have no hair since part of the job involves meeting the public. Then I thought, why on earth should I do that? My brains didn't fall out with my hair, so why not just apply the way I would if had a whole head of hair.”

One of the biggest concerns for our younger members has been how to handle a job interview. Some are fresh college graduates debating whether to buy or not a wig. Even though people say qualifications and personality really get you there, looks mean a lot during the job process. They think in terms of the real world, who's a prospective employer gonna pick??? The cancer poster child who looks like he just turned 16 or the guy next to him with at least a normal look??? It goes to the six-footer with the stock of healthy hair, strong voice and a firm handshake. We know, because many of us used to be that guy. While I would like to think otherwise, books are judged by their covers, at least at first.

At interviewing, some prospective employers may notice the wig and be bold enough to ask you "what's up with the hair?" (This is an actual experience). Others may either not notice, or may be afraid of the legal consequences of mentioning this first. Did you know that Alopecia Areata sufferers fall under the protection of the Americans with Disabilities Act...its because we LOOK like we may be disabled.

There have been a share of bad experiences but the majority have been favorable. Some of our participants have found it useful to make a joke or some type of reference to their lack of hair- and that seems to do wonders. For instance: If a client says it is a cold day out, they will make a comment such as, "try walking around with no hair and see how cold it is." Some people mix this with sarcastic humor but only when appropriate: tall tales of alien abduction, gas stove explosions and bar fights. You may find it is important to make reference to their hair because if the interviewer notices that you talk about it openly then they are less inclined to think you have cancer or something else. By making a point of it, it throws people off guard and also seems to releive a good deal of the tension that may build up and gets their thoughts off your hair and onto the business at hand. Incidentally in your explanation use terms such as an allergy or a skin condition. Mentioning autoimmune reminds people about AIDS (AIDS without the DS= autoimmune). Some hate calling it a disease because it evokes pity and sounds sickly.

Some alopeciacs usually declare, when asked the standard question "Do you have any medical or physical condition that would hinder or restrict your job performance, or for which we (the employer) might need to make special accommodations?" that they are fully fit and capable for the job performance, and only have a minor "cosmetic" skin condition. The prospective employer is usually satisfied with this answer. If they probe further, you can describe alopecia for them and state its (lack of) affects.

In some states it is illegal for an employer to ask any questions to an applicant, written or verbal, about their physical condition. The only time an employer can ask even the first question is if it's for a labor job, such as construction, anything that requires lifting, etc. Then they can ask "generic" questions such as, "Are you able to lift 30 to 75 lbs?" And if you don't get hired because of a physical condition that DOES NOT keep you from doing the job, that is grounds for a major lawsuit. The American Disabilities Act (ADA) has a lot to say on this, and a major function for them is to protect the employee or prospective employee from discrimination.

In the end, you should do whatever makes you feel most comfortable. You may find yourself more nervous wearing the wig, which causes you to sweat and itch. If anything, take advantage of the opportunity to explain your hair loss. Even I would be leary of hiring a nervous acting job candidate with a wig (is he running from the law?).

An NAAF conference seminar recommends that you carry a brief synopsis in your wallet for handing out, declaring that alopecia areata is a non-contagious skin condition causing the falling out of body hair and that people with AA are usually very healthy (their immune system DOES work!) and have few other problems.)

Remember confidence and qualifications are what interviewers are looking for. Any experienced personnel department has had their share of good looking (as in "normal" looking) duds. Fortunately a "professional presence" really stems from self-confidence. I guess my point is that we all can only speak from our own experiences. For some, being bald sucks- always has, always will. But it doesn't suck half as bad as letting the fact that you are bald get in the way of doing things that you want to do. Anybody who can bounce back from the emotional turmoil caused by AA can certainly handle anything that is thrown at them. Actually why don't you take advantage of being bald! With all the people that you have met, nobody ever forgets you! In business, there is a saying "It's not what you know. It's who you know." There's a lot more people that may remember you because you are bald than if you weren't.

To wig? or not to wig? that is the question … during sex

What happens when your hair keeps falling out and you can no longer deny that you have a problem? Whether everything goes or not may be immaterial to your present concerns. You are anxious, fearful and even apprehensive in asking, just what you do during sex? Let the old bald head hang out? You have a hard time feeling sexy, but there should be a solution. The following story is illustrative of this dilemma:

“Well I am 21 and single. I developed my first patches of AU while I was dating a guy for already one year. ( I know that this might not seem like a long time for you guys). Well he happened to be very supportive. I however, (even before the AA did not feel that he was the right one for me and was planning to break it off. The AA did not alter my decision at all and fortunately I had the strength to go through with it. I did it at a very hard time for me when my one patch had just tripled in size. I then proceeded to meet another guy. I met him when about one month later, at that point I was already wearing a pony tail wig (or more like an extension). I was able to put my hair up such that all the patches were covered. However the pony tail was very thin and unnatractive so I put on a piece which closely resembled my former hair. The ponytail was great, however I continued to lose my hair and had to go to a full wig. At that time my relationship with this new guy, Roy, was just at its begining and he knew nothing. I had told him that I got a haircut. He did however sense that something was wrong since I refused to let him touch my hair (wig). I did not realize until that point how often men touch a woman's hair and how sensual the act is. Well to cut a long story short, he asked me if he could come visit me at my college dorm (meaning that he would sleep over). I agreed only because I did not want the AA to stop me from forming and strengthening relationships. I knew that this was the time to tell him about my condition. This act took the most guts that I have ever had to use in my whole life combined. I did not know how to begin and was shaking like a leaf. I did it and was grateful to his wonderful response which was "Well, how are you taking all of this", and " I do not like you for your hair."

“Well many things have happened since then. One is I became AU. I just lost my eyelashes about 1 month ago. Two is that our relationship has flourished and we will be moving in together after my May 16 graduation. So you see it's not all that bad. Being truthful and honest is the best way to do it. If he would have reacted any differently then it would have been good to find out that he is an asshole (sorry) early on in the relationship.”

Sorry to be the bearer of bad news but there is no practical way to have sex while wearing a wig. Maybe the 'suction' wigs might stay on, but most wigs certainly wouldn't. Even if it didn't fall off, the lifespan of the hair would be dramatically reduced. For similar reasons you can't really sleep in a wig. The only thing to do is to take it off. I can think how inhibited one could be with the wig on, worrying about whether it would shift or fall off. Perhaps the really important question here for a single person to consider is "Do I feel close enough to this person to share who I really am with him/her?" Because if you don't, you should think twice about having sex with them.

It sounds trite, but If the person you're engaging in sex with can't deal with your bald head, it's his or her problem, not yours. But don't be surprised if your partner accepts (and even finds attractive) your bald head before you do. It takes a while to adjust.

Do blondes have more fun?

One of our members had an interesting story. Wearing different colored wigs allows you to compare the reaction of people around you. When wearing blonde wigs the reaction towards some of our AU members have been amazing. I guess gentlemen do prefer blondes! Take this case in point:

“A bit of background information here. I have always been blond, so my experiences are based on a 'blonde' life. My wig is long and blond. My AU is total, so I have not one hair on my body.

“I always found that I was treated quite well when I was out in public (doors held open for me, salesmen rushing up to help me in stores, etc). People tell me that this might be a blond thing, as they don't get the same great treatment. Anyway, I have no problem with going out without my hair - I tend to fit in quite well around the university area here. However, I find that I am COMPLETELY ignored when I do this. I'm not sure if people are afraid of me, or what, but I definately have to do more for myself.

“When I was in Ottawa this Feb, I found that if I wore my long blond wig, I got instant attention from the civil servants (this is a VERY GOOD thing if you are in OTTAWA). I was doing a lot of work at the National Library and National Archives (both federal insistutions) so getting instant help was great. In fact, I made friends with several of the security guards there, who did favors for me that I don't think would have gotten done if I had no hair.

“I was in Ottawa last summer, and got pretty crappy treatment from one security guard in particular (oh yeah, I had no hair on at the time). When I went back in Feb with hair, he treated me like a princess. By the end of the week he was bringing photos in of his vacations to show me.

“So people, although I hate to admit it, I do get talked to slower when I am blonde. Most people tend to speak s l o w e r to me, and are almost ready to applaude when I say 'anti-hypertensive'. (I actually had one guy say 'wow, that must be a hard one for you to say').”

What would you do if you recovered your hair? Would you even want it back?

“Heck yes! I want to know that I can ride a roller coaster upside down and not have to worry about losing my hair. I want my boyfriend to rub my back and not have to worry about his fingers straying toward my hair. I want to cruise in my friend's new convertible and not have to worry about the wind blowing my hair the wrong way. I want to hug my 3 year old cousin and not have to worry about him grabbing my hair too hard. I want to be impulsive, follow my friends and dive fully clothed into a swimming pool, without having to worry about my hair. And when Mr. Possibly Right comes along, I wouldn't have to dread having the "oh by the way" chat with him....wouldn't have to worry about how he'll choose to handle it.”

“If I found my hair again, I'd "love it, squeeze it, and call it 'George'" (yes, I grew up on Bugs Bunny). I'd never perm, color, bleach or dye it. I'd never complain about it having a mind of its own and I'd never, ever say the line "bad hair day" because my hair could never be that bad.”

Some good things and bad things about alopecia

Bad things:

  1. Staying at someone's house and leaving behind enough hair to knit a sweater. I always wonder what they think of me after I leave.
  2. The feeling of helplessness and loss of control. No one likes to be told that there is no answer, especially when we are talking about our own body.
  3. Covering up the spots. If your hair is straight when short but curly when long and trying to cover your spots, then this is a very frustrating endeavor (especially on humid days).
  4. Explaining it over and over again. This is specially true for those that don't believe the hair is falling because of an allergy or autoimmune condition. You tell them that your hair naturally doesn't grow and they don't believe you!
  5. Standing in a crowded place. If your spots are on the back of the head, you may wonder what people behind are staring or thinking.
  6. Wearing a wig. Many people can't wait to get it off at the end of the day!
  7. When people assume that you are either dying, a skinhead or trying to make a personal statement, when they are so far from the truth. If I want to make a statement I'll say something.
  8. When someone you've just met is talking to you for the first time and they look at the top of your head and not in your eyes

Good things:

  1. Being on this list server. Every story, from tear jerker to humorous anecdote, the sharing of ideas and giving advice, and the quest to find a cure for treatment. In every case there has been something good and inspiring.
  2. Learning quite a bit about medicine and nutrition.
  3. Not having to shave your legs or having your hairs pinched by your watch or bracelet. Having that supersmooth skin without any stubbles.
  4. It is sometimes easier for your friends to spot you in a crowd.
  5. Some people may be either amazed or fascinated by you- they think that you are special, different, lucky, sexy, and blessed.
  6. Your eyes and your smile are more noticeable.
  7. Learning to love yourself. "I'm attractive. People always tell me I should model - maybe I should."
  8. You may look really mean when you want to. This is particulary handy when you are filling the gas tank late at night and alone.
  9. It only takes half an hour to get ready for work in the morning.
  10. You don't have to ride in the rollercoaster that you are afraid of- instead tell your friends it is because you fear your wig will fall out.
  11. Allows the experience of fresh air and wind in your face to be pure ecstasy.

Selected book reading list (and related items)

Bebbie's Hair written by Beverly Wright from New Zealand is the story of the author's battle with alopecia areata and diabetes.

There is a Christmas book called Baldytop: An English Christmas Story writen by Pat Wynnejones, illustrated by William Geldart, and published by Oliver Nelson (a division of Thomas Nelson Publishers of Nashville). The story is about a doll that the helpers of Father Christmas forgot, in their rush, to put hair on her. They said, "No one will want a bald rag doll." Baldytop is a sad doll that wants desperately for someone to love her.

Alopecia Areata: Understanding & Coping with Hair Loss written by Wendy Thompson and Jerry Shapiro, published by the Johns Hopkins University Press, 1996. The co-authors are a woman who has had A.A. since childhood and a dermatologist who is the director of the University of British Columbia (Canada) Hair Clinic and a Professor of Dermatology.

Children's Island by PC Jersild is a somewhat romantic story portraying a bald woman as very attractive.

"Close to the Bone" by Jean Shinoda Bolen, is sub-titled "Life-Threatening Illness and the Search for Meaning", and is about the effects of serious illness on the emotional, psychological and spiritual experience of every person who undergoes it. Although she is talking mostly about cancer patients, there is a great deal regarding the journey through the feelings and experience of illness that I found relevant and meaningful for Alopecia and immune dysfunction. I think that much of what she talks about can be applied to most any chronic or long-term illness. She talks about the "descent into darkness" and the search for meaning and also, in the second half, discusses various methods of supporting the process - visualization, meditation, prayer, sharing, etc.

Another fascinating bit in the book is a discussion of the meaning of HAIR (this in relation to loss during chemo, but …)! One line states, “A Buddhist friend told her that a shaved head is one of the Buddhist traditions symbolizing anointment. … On taking vows, nuns in many traditions shave their heads. It is an act with archetypal significance that is also very personal and individual.” This reminded me of the posts we've had from people who have cut off their remaining hair when it's falling out, or made the courageous decision to shave their heads or go without wigs or hats, etc.

I also recommend the children's book "The Paper Princess" by Elisa Kleven. It is about a paper doll princess who flies away and tries on different types of hair before finally finding some real hair that a little bird puts on her.

Another nice source of inspiration for wee kiddies is "The Point" by Harry Nilsson.

For those who haven't heard it it's the story of Oblio who lives in the land of point where everything has a point. Even the people have pointed heads. Oblio's head is round and he is banished to the pointless forest.......Get it. Play it to your kids. Listen to it yourself and remember, "A point in every direction is the same as no point at all".

There's a cute children's book called "Wig!" by Laura Levine that is based on a song by the B-52's. The song has lines like "Julia's gotta wig, Kate's gotta wig, Fred's gotta cheap toupe, bubba's gotta big bouffant on"...with great illustrations of wild wigs. There is a line that may bother some people, "wig's on fire, take it higher!." In the book, the characters have wigs of fire shaped like fiery fir trees on top of their heads, with firemen all around. When my daughter and I read that page, she says a quick thing about fire safety (now just abbreviated as "they are not really on fire" or "we never really go near fires--they are too hot"). I can understand how that part would bother some people.

Cindy Wilson and Kate Pierson always don huge wigs or falls in there videos and stage shows. I remember hating the song when it came out. It made me very uncomfortable. Now I actually think it's acceptable. Here are these two women who don't have alopecia but still wear wigs. It sort of tones down the outcast factor for me. Another "bad" song one was Purple Toupe by They Might Be Giants. Parents should probably read the book or hear the songs before giving them to their children. Judge for yourselves on this one.

A new book written by Marvin Westmore is "The ABC of Eyebrow design." Marvin is the founder and president of the Association for Cosmetic Specialists. He has been a professional motion picture artist for over 35 years.

The contents of this book were printed in Skin Inc. Magazine. The publisher compiled six articles into a book all about eyebrow design. A copy of the book (about $20) can be obtained through:

The House of Westmore, Inc
12552 Cumpston St.
Dept MIC
North Hollywood,  CA  91607

Other books include:

Somewhat unrelated:

A great non-fiction book is called "A Civil Action" by Jonathan Harr. Its a fascinating story about a legal action that takes place as a result of the cavalier attitude certain industrial businesses had in regards to disposing of solvents and chemicals and the ensuing ramifications to a towns water supply, followed by high concentrations of certain diseases and medical conditions, including skin rashes, eczema, and leukemia.

Panasonic Interactive Media has just inroduced Baldies, a multiplayer action strategy computer game and I quote …

“… featuring cute but ruthless little bald characters that you control in order to wipe out the enemy Hairies and attain ultimate Baldie world domination. In this real time adventure, you assume the God-like role of managing this pudgy pawns--controlling where they go and what they do as they help you to build your empire level after level. To survive and grow, you must quickly make resource management decisions on which Baldies should become Workers, Scientists, Soldiers, or Builders. Each profession is vital to your actively battling society, but the key to success is balancing each group …“

A free working demo of the game can be downloaded from the internet from the c|net Download.com.

There is a children's CD/video collection (maybe 6 of them) called Veggie Tales. For those of you who are Christians, I highly recommend them. They are distributed by Word, Inc.

They are hilarious, kind of Monty Python-esque. One of the videos is called "Are You My Neighbor?". The whole video is about how we should all treat others. Love thy neighbor as thyself. There is a silly song in-between skits called "The Hairbrush Song." It is a cucumber singing about the fact that he can't find his hairbrush. (It's kid's stuff, bear with me!) Then someone comes in and tells him that he doesn't need a hairbrush because he doesn't have any hair. However, after this song there is another one entitled "I Can Be Your Friend." The lines that come to mind are:

God made all kinds of people.
Some are skinny, some are stout, 
but the inside is the part
that we're supposed to care about.

I can be your friend. I can be your friend.
If your hair [we always substitute "skin"] is red or yellow
we can have lunch or share our Jello.

It is geared for children aged 3-8 but we, as parents enjoy watching it as well. Very funny! This video has a lot of good messages for all ages. It does come from a Christian viewpoint, but I believe the message is universal.

The Complete Book of Essential Oils and Aromatherapy has entries on oils for alopecia. There is a alopecia shampoo, conditioner and a nighttime treatment. There are recipes for each one of them. It was written by Valerie Ann Worwood. (See also aromatherapy.)

On taking antidepressants

Some of our members have played games with themselves trying to cut back on the dosage of antidepressants or refusing to take the same. In essence they either refuse help (drugs) in treating their depression or believe (incorrectly) that they may get addicted to the medication. This attitude needs to e changed. You have to view depression as any other illness (diabetes, high-blood pressure, etc.) that might require someone to take medications long-term. If you had diabetes, you certainly wouuld not hesitate to take insulin for the rest of your life. If you have depression you should have no problems with taking antidepressants as long as they work for you. Antidepressants are not habituating. Neither can one develop a tolerance to them, necessitating the ongoing raising of same. What happens is that antidepressants simply need to be titrated up to its proper clinical dosage where one achieves the most benefit. Occasionaly an infective trial with one antidepressant may prompt a physician to look at another more effective antidepressant such as Serzone, Zoloft or Effexor.

Selective serotonin reuptake inhibitors (SSRIs) are the newest generation of antidepressant in the market. The new anti-depressants don't suppress serotonin. They hold it in the gap between brain cells where it can work instead of letting it "reuptake" back into the cell where it just sits there doing nothing. So they have the effect of increasing serotonin in our brains.

No, you can't buy serotonin, and if you could it couldn't get into your brain anyway because it's too big to cross the blood-brain barrier. Your body makes it from the amino acid tryptophan, which you can only get with a doctor's prescription now because of contaminants that get into it in the process of making it that are hard to control. You can get tryptophan mixed in with other amino acids from vitamin stores.

Serotonin reuptake inhibitors work quickly and effectively for depression but unfortunately they also tend to raise the blood pressure. The ssri's include Prozac, Paxil, Zoloft, Effexor and Serzone. Imipramine (aka Tofranil) is a tricylcic antidepressant, and belongs to the generation before ssri's. Even before tricyclics came out, there were MAO inhibitors. It is very dangerous to mix tricyclics with MAO inhibitors.

It takes at least 4 weeks for a tricyclic to "kick over" so the person who's taking it begins to feel less depressed and, especially, for the most crucial side effects of fatigue, fogginess and feeling as if one's walking through molasses to lessen. Titration must be done very slowly because of these side effects. Cardiac patients cannot take tricyclics nor should those who are hyperthyroid or on synthetic thyroid medication because of possible heart arrhythmias/tachycardia. Tricyclics also cause orthostatic hypotension (low blood pressure) and very dry mouth. In some people (just as with some people on ssri's), they *may* cause alopecia (although not of the areata type). There are several good Web sites with lots of information regarding anti-depressants, one is the Internet Mental Health.

Dumb things people say

“I was talking to my sister-in-law about my AU and how I've been trying to deal with it, my feelings, etc. She said, "Yeah, I know how you feel. I have a fungus problem on my big toenail, so I can't wear sandels!"”

“Couple of months ago my friend and i were doing our daily walk/run. She turned to me and said,"I really hate my mascara, what kind do you like?" I (with straight face) said, "Gee, can't recommend mine....LOOK what it did to my lashes!!!" She got a blank look (and she's not even an alopecian).”

“I was in makeup for a TV interview when the producer came in to check some details. I said I hoped the powder would reduce the glare from my 'chrome dome', and she said, "It doesn't matter what you say, no one will change the channel while you're on the screen!"”

“I too have had harrowing experiences with wig shops and only bought out of catalogs for a while. Not only that, but once when I asked if my health insurance would cover my wigs as prosthetics they laughed at me and said "It's not like you have cancer!" Unfortunately, ignorance is pervasive.”

Famous sayings from our participants

“Life is equal opportunity. We all get 24 hours in every day, no more or less. What counts is what you do with them.”

“Regarding cortisone shots as a therapy for alopecia areata: ...calves and baby chicks are shot full and fed hormones from practically day one. I somehow feel that this is related.”

“That is why I ask so many questions here, because personal experience is a very valuable thing for all of us.”

“The best piece of information ever sent to me on this list was this: Use hair spray and dab a piece of cotton with it into your brow after you pencil the brow on. It will STAY ON ALL DAY.”

“Life is a learning experience, with alopecia areata, I am still trying to figure out what the lesson is. Part of it may have to do with setting boundaries for myself, taking care of myself and not always putting everyone and everything else before me.”

“People don't take the time to think before they react. They believe in what they "see". If they see that you have confidence in yourself, they figure that you have a reason for doing so and they will follow you in that belief.”

“I have always believed that you should concentrate on the things you can control and try not to worry about those things you have no control over.”

“The person who is humorous, caring and compassionate can live a great life with or without hair. I would be happy with a cure but I can live like this my whole life.”

“I believe that throughout life we are all faced with challenges. You can either turn your back and become a victim or you can use this to make you a better person. Alopecia has helped me to remember what I have always known; that family, friends, honesty, integrity and good values are the only things that matter in life. Once those are in line, everything else will fall into place. Just be patient.”

“Life isn't about keeping score. It's not about how many people call you and it's not about who you've dated, are dating, or haven't dated at all. It isn't about who you've kissed, what sport you play, or which guy or girl likes you. It's not about your shoes or your hair or the color of our skin or where you live or go to school. In fact, it's not about grades, money, clothes, or colleges that accept you or not. Life isn't about if you have lots of friends, or if you are alone, and it's not about how accepted or unaccepted you are. Life just isn't about that.... But life is about who you love and who you hurt. It's about how you feel about yourself, It's about trust, happinness, and compassion. It's about sticking up for your friends and replacing inner hate with love. Life is about avoiding jealousy, overcoming ignorance and building confidence. It's about what you say and what you mean. It's about seeing people for who they are and not what they have. Most of all, it's about choosing to useyour life to touch someone else's in a way that could never have been achieved otherwise. Those choices my friend are what life is all about.” —Shana, 14 year old patient with AA.

“Alopecia has really, truly taught me a lot. One of the droplets of learning, for me, is that life is not, and should not be black and white. True, a rock is a rock. A rock is a resting place. A rock is a place to be stuck between. A rock is earth, a mineral. Wet is wet. Wet is refreshing. Wet is annoying when one is dressed up and chilled. Wet is damp. Wet is a sign of hope and relief in a drought. If I treated the world, black and white, then, my hair would mean way too much. Hair, if ya got it, is a crowning glory. It is a statement of who you are. Lack of hair is, surviving, learning, but also a statement of who I am.”

This is a song by one of our members that developed some very unpleasant emotional side-effects to Prednisone, e.g., the "screaming meemies" (steroid psychosis):

Prednisone - cortisone -
should I try to make my own
or should I use one on prescription.
Chemicals defy description.
As my hair is falling out,
I cannot help but think;
Prednisone -cortisone -
drizzle drizzle drazzle drome,
time for this one to come home.

“Maybe we could turn this thing around if we started sending scholarly articles to medical journals and others with titles like "Massive cranial hirsutism, attempts to cure by shaving" or "The gross malformation of the scalp by the presence of uncontrollable hair growth". The hard part would be convincing everyone that the long glossy hair of the supermodels is a deformation (caused perhaps by hunger, malnutrition, continual dieting?)... and that the real beauty is the unadorned scalp.”

“I now practice what I call " in the face alopecia ". If you don't like my looks it is your problem, not mine. I make a point to tell everyone I know about alopecia. To be informed is to be armed. And the truth sets us free.”

“Sometimes we need a handful of cold water in the face and a reminder that, no, we are not the center of the universe when it comes to self-consciousness.”

“It seems to me that babies are more attracted to me since my hair fell out. I think I look like another round-headed, smooth-faced baby to them, only bigger!”

“I am recognized for my smile and/or my haircut and my abilities and/or gifts, and if a pill came out tomorrow that would guarantee hair, I would remember where I've been, who I am, what I know, how I feel and would have to carefully consider whether or not to take the pill.”

“I grew up filled with fear- of this condition, of other people, of lots of things. I had to fight to get where I am now which is finally grown up. I had to forgive my parents for overprotecting me. I had to learn how to say alopecia without throwing up.”

“Whether Princess Caroline has AA or not, one thing for sure is that her willingness to go on world-wide television in nothing but a scarf is quite inspiring. She helped to show what we all already know....beauty is not only hair deep.”

“I already understand the reference to a roller coaster as the aa logo. Just in these 120 days we have been up and down more than we could have thought, and now realize that no matter where we are, we know only one thing for sure: things won't ever stay the same long. We have already had laughs as he made comments about how he will bald soon without even a trace of sadness, and we've fallen apart as we heard mean comments from his peers.”

“...This was when I was freshly AU. I spotted a young guy sitting alone near the dance floor. I was excited to meet the first person I had ever seen with the same condition as I had. I went over to talk to him and could tell he was extremely uncomfortable. Then I realized why. One bald person attracts enough attention. Two can be a spectacle.”

Parting shots

“Life sucks and then you die.”

“Why are aliens always portrayed as hairless? Are we special people, maybe descendants of aliens, or should we sue for discrimination?”

“I had never heard of Alopecia Areata but it sounds like a cheap stripper's name!”

“The concept of presenting yourself to one doctor and surrendering the responsibility for healing to him or her no longer seems to be working.”

“If this is as bad as it gets, this is going to be a great life-- it already has been.”

“I, as many on the list seek any knowledge on why I look like someone from the East German Swim Team.”

“Considering we all learn from each other at specific times of our lives a good saying should be, "When you are ready, a teacher will come."”

“I think people with alopecia come equipped with bulls**t meters, i.e., they can immediately weed through most superficialities a lot of people have to offer and see what they are truly like.

“In the famous words of Popeye the sailor: "I ams, what I ams, and thats all what I ams."”

“Some life crises pull people together and some drive a wedge between them.”

“If you can't change the situation, change your outlook!”

“Well, I lost my wig in the middle of a crowd on the street. A kind older woman picked it up and handed it back to me. I was mortified! She said that I should use some tape on windy days,...she always did.”

“Reminds me of the dyslexic agnostic insomniac that sayed up all night wondering if there really was a DOG.”

“When people use alopecia aeata or any disorder as an excuse they are setting themselves up for failure.”

“Where there's hair, I want to count it.”

“Friends help you move. Real friends help you shave.”

“If it ain't broke, don't regrow it!”

“For the last couple of days I have been bummed thinking why snowmen have alopecia.”

“In response to a remark by child that has gone uncorrected by a parent, "I can see where your son/daughter gets his charm from!"”

“In repsonse to a mother's tribulations,...So now I know what causes alopecia, I'm a mom of 4 too!!!!!!!”

“I personally like to tell my friends to rub my head.”

“Well, one that I have heard more than once....

"Guess you sure save on haircuts and shaving cream..."

To which I usually reply:

"Yup, but that Turtle Wax sure is expensive...."”

“There is nothing more appealing and sexy to most people than a person that is comfortable with themselves.”

“Always remember, if you are short of funds, you can always stand outside a hairdresser or barbers shop with a protest sign- until they give you some money to stop and leave.”

WHERE CAN I FIND ADDITIONAL SUPPORT?

The National Alopecia Areata Foundation is a support group established over ten years ago. The Executive Director is Ms. Vicki Kalabokes. They have a lot of information regarding the condition free for the asking. Standouts include "What You Should Know About Alopecia Areata" and a short video that illustrates in simple terms the condition to kids (and their teachers). This video is called "This Weird Thing That Makes My Hair Fall Out". Some of their efforts are also targeted at physicians. In this regard they sponsor a booth at the American Academy of Dermatologists where they try to keep physicians informed about diagnosis and adequate treatment (none at present). The telephone number for the National Office is (415)456-4644 or FAX (415)456-4274. One member who has promised support is Mr. Fred Wahl, who can be reached via e-mail at TXDW80A.Prodigy.com. The email address for the NAAF is NAAF@compuserve.com.

Incidentally, the Alopecia Areata Research Foundation, which had been in operation for several years, has recently been dissolved (1996). Malbert Smith, Chairman of the Board, presented their funds and promise of support to the NAAF. For more information you can contact them at P.O. Box 150760, San Rafael, CA 94915-0760.

In the UK there is an organization called Hairline International (The Alopecia Patient's Society) started by Elizabeth Steel, a TV presenter who contracted AA. She wrote a book called "Coping With Sudden Hair Loss". The society meets some three times per year, usually at St. Thomas Hospital in London. They do not have an Internet page or e-mail but their contact address is:

Lyons Court
1668 High Street KNOWLE
West Midlands
B93 OLY
United Kingdom
Tel 44-1564-775281 (0900-1500 GMT)
Fax 44-1564-770602

Two additional support groups in England:

Alan Whitfield
48 Grey Towers Drive
Nunthorpe Middlesbrough
Cleveland TS7 OLT
Michelle Chapman
Gibbs House
Kennel Ride
Ascot SL5 7NT

A support group for Alopecia Areata, Totalis and Universalis exists in Toronto, Ontario. They have monthly meetings and a branch in Mississauga (which is a suburb of Toronto). They are called the Alopecia Areata Support and Information Services (AASIST). For more information call (416)410-5462.

In France Dr. Philippe Bataille started the AAA (Association Alopecia Areata). At present we are unaware of the activities and amount of support he provides; however, Dr. Bataille can be reached at:

Complexe Medical du Lycee
36 Route D'Eaunes
Muret 31600  France

Other support groups include:

Alopecia Areata Deutschland e.V.
AAD e.V.
Postfach 300146
53181 Bonn, Germany
Canadian Alopecia Areata Association
Box 42084, RPO Millbourne
Edmonton, Alberta
Canada T6K 4C4
Hairline International
39 St. John's Close
Knoll, Solihull
West Midlands
England B93 0NN
Landsforeningen Alopecia Areata
Postboks 9851 IIa
0132 Oslo, Norway
National Alopecia Network
Box 21776
Detroit, Michigan
USA MI 48221
(313) 861-0331

The National Alopecia Areata Foundation has a support group in Ottawa, Canada. The support leader is Eileen Doi and she can be reached at (613)825-6940. Incidentally we have also heard of a good place to buy wigs in Canda: Caralyn's Hair and Wig Design, 1568 Merivale Road, Nepean, Ontario (613)224-7206 or 1-800-508-5552.

Svenska Alopeciaforeningen
Box 4070-09
128 05 Bagarmossen
S-Sweden

For female pattern baldness:

A Friend Indeed (newsletter for "women in the prime of life")
Box 515, Place du Parc Stn
Montreal, Canada H2W 2PI
(514)843-5730

For male pattern baldness:

Bald Headed Men of America
3819 Bridges St.
Morehead City, North Carolina
USA NC 28557