Frequently Asked Questions about alopecia

Appendix C

CHILDREN

Having dealt with a child growing up with Alopecia I have had many occassons where I needed to address school and camp personel, parents and other children. The first thing everyone cares about is "is it contagious?" (I always get a giggle from that one.) As I've posted elsewhere, as soon as anyone understands what it is, as soon as we de-mystify it, it becomes normal. My daughter has had 2 negative encounters over 12 years. At the risk of being indiscreet, I'm going to tell you the name of the person involved in the first incident because I believe it will put the story in the proper perspective. (It will also add to its entertainment value.) My daughter goes to a private school in New York City. One day on the school bus, Eric Trump (yeah, that Trump) started calling her baldy. I had prepared her for the possibility of teasing from an early age. I had told her that she might just as easily be teased about a pimple on her nose or for wearing eyeglasses or for having baldness. The basic tenet of teasing is, if it doesn't push your buttons, it won't be fun or effective for the teaser. So no matter how much it hurts or how embaressed you are, just IGNORE it. Do not respond. Read a book. Walk away. This was a constant drill, she was ready for the attack. She completely ignored Eric. He kept going, she kept ignoring. The other kids on the bus were silent. Finally one boy said "Hey, Eric, knock it off." He did. The incident passed. Eliza told me about it and I chose not to tell the school. I wanted her to fight her own battles. About 4 months later, when all the press was going on about Ivana & Marla, etc., someone on the bus started giving it to Eric, teasing him about the women in his Dad's life. Eliza stood up and said, "Boy, if you can't find something better to tease a guy about than his mother, you are really pathetic". As you can imagine, the kids on the bus were in shock. From then on these kids had enormous respect for Eliza. They would never tease her about her hair and if anyone did they would be ostracized. I gave her the ammunition but she protected herself by taking the high road. If the dean had scolded them, brought them together and said,"NO teasing." it would never have gone down this way. When Eliza returned to school this Fall with a hairpiece for the first time, she was greeted with either no comment or "your hair looks great." I received dozens of phone calls from other mothers congradulating me on Eliza's success and reporting how their children had come home from school announcing how great she looked. The second episode was not so great. At the end of last summer, my daughter went to a gymnastics camp for two weeks. She knew no one there and she's not a great gymnast but she wanted to learn. She had been wearing a hairpiece for the first time since the end of June. She begged me not to tell the camp about her Alopecia. The instructor insisted on all the girls tying their hair back. When Eliza did that her wig became obvious. One of the girls in her bunk harassed her constantly, threatening to steal her wig off her head while she slept. She did not want to admit she was wearing a wig. I told her to tell this girl the truth, that hiding it was creating difficulty not precluding it. She refused. I picked her up and took her home after one week. It was a horrendous situation. So, based on my experience my advice is: "Teach" the school, start with the nurse, about Alopecia. Do not speak to the kids, it will weaken your childs position with his peers. Discuss with the school the idea of a succinct but informative educational mailing to the parents so that they can privately educate their children. Encourage parents and school to call you with any concerns or questions. De-mystify it, make it normal and take away the fear. Do not single your child out publically to his peers as being different. Teach him what to expect and how to respond. Encourage him to share himself with his friends and not to hide, and then allow him to "come out" when and if he's ready.

I'm not aware of any "new" treatments any where that really work. The Derms current options are painfull or uncomfortable at best with no guarantee of any results. I've had AA since age nine, currently 39 next Monday, and AU for the last 4 years.

I'm no longer looking for a cure, but will keep informed if the med profession finally finds something. I've been through most of the treatments out there, and from my experiences, I couldn't recommend to anyone to go through the emotional roller coaster of a lot of "false" hopes and pain.

Through the years, AA does seem to come & go. It's like our biological clock is running at a different time than "hairy" people. I went through a period of complete regrowth for 14 years. And even strainger is, during that time I had no loss of hair at all. I mean, that the average person lose's an average of some where around 100 hairs aday. I lost none during the point in those 14 years.

May God give you and your son strength and peace. I now look at my AU as a blessing. I know that through my struggles with this disease, it has formed me into the person that I am. An honest, carring, loving,understanding individual.

Hair does not make a person complete. I believe that it is much more important to focus on the other things in life, than why I don't grow hair. Through Jr. High & HS, I wore a wig to supposedly cover up my problem. With that came a whole new set of problems. If I had to do it all over again, I would have shaved my head back then. Gotten past the initial shock, than moved on.

I now pray for all those that are suffering with this, to give them strength. I've read through all the current information on this, and nothing has really changed. And until the medical profession comes up with a "real" cure or solution, I couldn't recommend to anyone to go through the different treatments, especially a kid.

Last week, I was actually very grateful that one of my children has alopecia. I have 5 kids by the way. My youngest , twins, had lice. Oh what a joy to sit and go through each childs hair for several hours at a time as well as bag up all the stuffed animals and do a million loads of laundry, etc. (I am being sarcastic in case you couldn't tell). By the time I was finished all of the kids were very frustrated with me for having their hair practically tied up in knots for an hour and a half, EACH!!

The "thrill" of finding your babies infested with something so nasty is reinforced by the expense (special shampoos, sprays, carpet and upholstery cleaning agents, etc.) and the time investment; thoroughly de-lousing each family member, the washing machine works overtime for DAYS and spraying or cleaning every single item in your home.

Did you know that head lice in Hawaii is called "ukus" and EXTREMELEY prevalent. The humid, lush climate there is the perfect environment for breeding lots and lots of bugs including the nasty little parasitic head variety.

I am also very straightforward with my son and his friends about my hair loss. One day at his school, when I was picking him up, a younger child asked me, "Is it true that you don't have hair?" and as the other kids gasped at his audacity, I simply whipped my wig off, saying, "Yes, it is true, see?" and then proceeded to say, "I have a disease called alopecia. It doesn't make me feel sick and nobody can catch it, it is not contagious, but it simply made my hair fall out. It might grow back and it might not." and I smiled, and the kid who had asked said, "OK. Thanks." and they all went back to what they were doing. I asked my son later if I had embarrassed him, and he said, "no, they were asking me and I didn't know if I should tell them or not. So it was good, now they probably won't ask me about it any more."

But, sorry to also add a less welcome thought, it is different with infants who are not yet sure of speech and vision. It is also true that when my son was a baby he did not recognize me when I wore a long wig. It was not the ABSENCE of hair, but the PRESENCE of hair that upset him. And it was also compounded by the fact that I was wearing perfume and he therefore could not recognize my natural scent. Infants have a special need for reassurance, NOT because they think there is anything wrong with having hair or not having hair, but simply because they are less sure of what they see, hear and smell - the world is new. In my case, I was the only parent and the only person my baby had to interface with the world in his behalf. It seems very simple and natural to consider that. It seems to me that it is right to consider the infant's point of view in this. Suggestions? Well, I developed little rituals that would help my baby to recognize me under any circumstances. Little things I said that no one else would say, little rhymes, little songs, special pet names. And we played. After I realized the problem, I took off any wigs and brought all wigs and hats out of the closet and we played with them, in front of a mirror. He tried on hats, wigs, looking at us both in the mirror. He played with the hair in his fingers - I can comb out tangles in wigs and it's better than him getting tangles in his mind. We put wigs on teddy bears. We finger painted on my scalp with strained peaches. It was fun. And he was never afraid again, no matter which wig I wore. Babies learn by playing.

For any of you guys who remember my neighbor Joe, who is 10 today, a little update. His aa had gotten real bad.....and finally he dicided to shave the rest. Things in school have been great since he and I discussed alopecia with his grade level (4th grade). The other day a 5th grader came in with his head totally shaved!!!! Joe feels sooo cool that an older kid would choose this look. His mom feels the relief too. She now understands the pressure is off, constantly checking out if there are new spots. The other day joe had to go to a new school to start wrestling. As he entered the school, he paused. He looked at mom and held his baseball cap in his hand. He said, "now do i want attention today, or do i not want attention today??" He thought about it and said, "Hey, I want attention today!!" and stuffed his cap in his knapsack!!!!!!!!!!!!!! YEAH!!!!! for Joe!!!!!!!!!!!!!!!!!!!!!!!!!

ARE THERE SUBTYPES OF ALOPECIA AREATA?

I have always considered myself AU, but my underarm hair (of all things!) has never stoppped growing. I guess I'm AU with UH (underarm hair).

QUALITIES TO LOOK FOR WHEN CHOOSING A PHYSICIAN

GOOD HISTORY AND PHYSICAL EXAMINATION

When I took Kyle to a specialist at Yale University, he asked all sorts of pertinent questions regarding family history. Not only did he ask if anyone in our families has had/have AA, he also mentioned early greying and thyroid problems. He explained that these are also considered auto-immune disorders and could explain the hereditary link with AA. This doctor was an expert on child dermatology, but he passed away last year, so when Kyle's AA triggered again this fall, we only took him to his pediatrician and had a major physical complete with blood workup to ensure that he was indeed healthy (which, thank goodness, he is).

EMPATHY

In March, it will be two years that I've been AU. It only took a week and a half for me to loose all the hair on my head and during that month, I saw two Dermatologist. The first one literally came in, looked at my head and said, "You have alopecia. There is nothing I can do for you." I had a list of questions and concerns and he hurridly gave me a sheet of paper with a paragragh on it and said he needed to go. I was still so confussed when I left and had received no information from him.

The second Dermatologist seemed nicer, but upon seeing my head again reacted the same way. They didn't even try to answer my concerns and questions (maybe because they didn't have the answers).

I was then a week later at Primary Children's Hospital for checkups on my 7 month old premiee baby and the pediatrition was SOOOOOO sweet. I asked her about this condition. She admitted she did not know alot about it, listened to me, and promissed to send me some information she knew she could get from her medical contacts (which I received a week later) and even told me about the NAAF organization and got me that address. I was so overcome and grateful for her caring and concerned attitude that I told her about my earlier visits with the Dermatologists. She patted my hand and said not all Dermatologist are like that, but she said there are still alot of them that are only "skin deep."

After my initial hearing test, I was told to go back into the waiting room. Mind you, the waiting room was full. I waited a bit, and then the "Dr." came out, and if front of all those people, he said, "Well, I hate to paint a black picture, but you're going to go deaf." #1: He didn't even have the professional decency to take me to a room away from everyone to break the news. And #2: I am a FIRM believer that no one, and I mean no one in the medical profession (or anyone else for that matter) can predict the future. Sure it may LOOK that way, but who's to say a treatment or cure won't be found within the next several months or so? How can they tell with such utter certainty that I will go deaf within two years? That was 27 years ago, and I'm still not deaf! Sure, my hearing is not great, but I function quite well. I talk on the phone, I hear a baby cry, and I even hear music! HE WAS WRONG! And you know what he did? He wrote a letter to my family Dr. and told him I needed psychiatric care because I was in denial and needed help to deal with it. Wanna know why he wrote that? Because when he broke that bit of news to me in front of a room full of waiting patients, I started crying. I think he needed the help, not me.

Another Dr. told me around that same time frame that I would be in a wheelchair within five years. I have rheumatoid arthritis. I'm not in a wheelchair, and I never have been. I do have joint pain and inflammation from time to time, but in no way am I ready for a wheelchair. By looking at me, you could never tell I have this condition. So, Meredith, Drs. don't know everything, and I've learned to challenge those who think they do. If a Dr. would look at me today and say, "You are going to go deaf within a year.", I'd ask him something like, "Where'd you get your license? In Oz?" The only time I would be serious about believing any Dr.s predictions is when they have valid, valid tests for a disease that is life threatening like cancer or leukemia, etc. If a Dr. told me I had about six months to live, I'd probably listen.

So, the moral of this story is "believe half of what you see and none of what you hear", as the saying goes. I strongly believe that my attitude has everything to do with the fact that I am still hearing and still walking. Had I believed those Dr.s, I KNOW what would've happened. Hang in there, Meredith. Don't be afraid to get second opinions. Or thirds, for that matter.

KNOWLEDGE AND ATTITUDE

We are going to be seeing a new dermatologist soon. We had been discouraged by the attitude and general lack of knowledge our previous derm had. I have been corresponding with a mother of a 15 yr. old with AU who has been seeing our new derm. She didn't seem to be impressed with this doctor either. I guess I just feel very let down by the doctors we have seen- a sentiment I seem to share with many AA people. I don't expect a miracle, I'm past that point now. However, I do expect my daughter to be treated with respect and I expect the doctors to be kind and concerned. Of the 3 dermatologists we have seen, my husband and I have known more about alopecia and the treatments that are being used than they did- or at least that was our impression. They seem to expect us to accept their word as law and run with it. A previous dermatologist told us that the next step was to try Anthralin. We chose not to because of the staining. It is difficult enough without this lovely added effect. Also, am I right in saying the the success rate with Anthralin isn't that much higher than with various topical steroids, i.e.-Lydex, Elocon, etc?

I guess we expect too much as parents. Also, why is it that all of the pediatric dermatologists are at teaching hospitals? When we have gone in for appointments, it is like a carnival side show and we are the attraction. There have been as many as 4 interns with the doctor and assistant at our visits. One even went so far as to say, "Now what seems to be the problem?"

Someone else said that AU is not who we are, and that's right. When I had my baby, a long time ago, my pediatrician used to say "Isn't he the most beautiful little Buddha baby in the world? He just makes you want to pick him up and love him." I used to laugh and say "You probably say that to all the moms". And then he was serious, and he said "No, I don't. I don't tell a mom how beautiful her baby is, if it's not. You can ALWAYS find something good to say without lying. A baby can have pretty eyes, a sweet disposition, be very strong, or even have sweet little teeth. You can find that something if you just look." I've always admired his attitude, and have found it useful when dealing with people...you can always find something nice, if you just LOOK - and just remember, others can find that in you. But if you're angry and/or withdrawn, you just make it that much more difficult for someone to see your "light", they just see your shell. So, I guess my thought for the day is "don't hide your light under a bushel". If you like people, and put for an effort, people will like you, no matter what you look like.

FAMOUS ALOPECIACS

PRINCESS CAROLINE

I taped the Prime Time Live special tonight with the intention of showing it to my eleven year old daughter tomorrow...... All the ingredients were there, beautiful princess, palace, fairy-tale...not!

There is no doubt that Caroline has alopecia, even though she refused to acknowledge her brother's (prince Albert) reference to her "skin condition". But what a tragic figure, and such an unhappy one. Her response to what she would wish for if she were to arrive in heaven at this instant, revealed a tortured soul who has long since given up waiting for her frog prince.

Longing for personal peace and solitude, as echoed by her favourite poetry reference, this is one 'melancholy babe'. Unfortunately, this is not a script with a fairy-tale ending, and although I don't believe for a moment that her current outlook on life is due to alopecia, there is little doubt that it is one more burden for this tired widow to bear.

For now I'll leave my daughter to continue her dreams of a handsome prince, a beautiful princess with lovely hair, and a long life happy thereafter. Christmas never held quite the same magic for me, after I discovered there was no Santa Claus.

We are but what we dream we can be.

Goodnight Caroline, tonight I wish for you the dreams of my daughter.

I also watched the Princess Caroline segment on the Prime Time live broadcast. I think it is was interesting that she might have alopecia areata, but wasn't let down by her decision not to discuss it. My experience with my friends, family and associates strongly indicates to me that my "condition" is of much more concern to myself than to them. I am relieved that this is the case. Yes, there are some questions and concerns, but basically everyone is too preoccupied with their own lives to worry too much about mine. I am happy its this way. Although I pursue treatments to grow back my hair, my main concern remains to be better adjusted to all adversities in my life, do what I can to avoid most and try and embrace the ones I can't do anything about. After one look I don't think the world is really all that concerned about how we wear our hair or lack of. If Princess Caroline chooses to try and keep 1% of her existance out of the public eye, I certainly can't criticize her for that.

COPING

INSPIRATIONAL/RELIGIOSITY

“If the day and the night are such that you greet them with joy, and life emits a fragrance like flowers and sweet-scented herbs, is more elastic, more starry, more immortal,--that is your success. All nature is your congratulations, and you have cause momentarily to bless yourself. The greatest gains and values are farthest from being appreciated. We easily come to doubt if they exist. We soon forget them. They are the highest reality....The true harvest of my daily life is somewhat as intangible and indescribable as the tints of morning or evening. It is a little star-dust caught, a segment of the rainbow which I have clutched.”

—Henry David Thoreau

Jerry was the kind of guy you love to hate. He was always in a good mood and always had something positive to say. When someone would ask him how he was doing, he would reply, "If I were any better, I would be twins!" He was a unique manager because he had several waiters who had followed him around from restaurant to restaurant. The reason the waiters followed Jerry was because of his attitude. He was a natural motivator. If an employee was having a bad day, Jerry was there telling the employee how to look on the positive side of the situation.

Seeing this style really made me curious, so one day I went up to Jerry and asked him, "I don't get it! You can't be a positive person all of the time. How do you do it?" Jerry replied, "Each morning I wake up and say to myself, Jerry, you have two choices today. You can choose to be in a good mood or you can choose to be in a bad mood. I choose to be in a good mood. Each time something bad happens, I can choose to be a victim or I can choose to learn from it. I choose to learn from it. Every time someone comes to me complaining, I can choose to accept their complaining or I can point out the positive side of life. I choose the positive side of life. "Yeah, right, it's not that easy," I protested.

"Yes it is," Jerry said. "Life is all about choices. When you cut away all the junk, every situation is a choice. You choose how you react to situations. You choose how people will affect your mood. You choose to be in a good mood or bad mood. The bottom line: It's your choice how you live life."

I reflected on what Jerry said. Soon thereafter, I left the restaurant industry to start my own business. We lost touch, but I often thought about him when I made a choice about life instead of reacting to it. Several years later, I heard that Jerry did something you are never supposed to do in a restaurant business: he left the back door open one morning and was held up at gunpoint by three armed robbers. While trying to open the safe, his hand, shaking from nervousness, slipped off the combination. The robbers panicked and shot him. Luckily, Jerry was found relatively quickly and rushed to the local trauma center. After 18 hours of surgery and weeks of intensive care, Jerry was released from the hospital with fragments of the bullets still in his body. I saw Jerry about six months after the accident. When I asked him how he was, he replied, "If I were any better, I'd be twins. Wanna see my scars?"

I declined to see his wounds, but did ask him what had gone through his mind as the robbery took place. "The first thing that went through my mind was that I should have locked the back door," Jerry replied. "Then, as I lay on the floor, I remembered that I had two choices: I could choose to live, or I could choose to die. I chose to live.

"Weren't you scared? Did you lose consciousness?" I asked. Jerry continued, "The paramedics were great. They kept telling me I was going to be fine. But when they wheeled me into the emergency room and I saw the expressions on the faces of the doctors and nurses, I got really scared. In their eyes, I read, 'He's a dead man. " I knew I needed to take action." "What did you do?" I asked. "Well, there was a big, burly nurse shouting questions at me," said Jerry. "She asked if I was allergic to anything. 'Yes,' I replied. The doctors and nurses stopped working as they waited for my reply...

I took a deep breath and yelled, 'Bullets!'

Over their laughter, I told them, 'I am choosing to live. Operate on me as if I am alive, not dead." Jerry lived thanks to the skill of his doctors, but also because of his amazing attitude. I learned from him that every day we have the choice to live fully. Attitude, after all, is everything.

I asked God for strength, that I might achieve.
I was made weak, that I might learn humbly to obey...

I asked for health, that I might do great things.
I was given infirmity, that I might do better things...

I asked for riches, that I might be happy.
I was given poverty, that I might be wise...

I asked for power, that I might have the praise of men.
I was given weakness, that I might feel the need of God...

I asked for all things, that I might enjoy life.
I was given life, that I might enjoy all things...

I got nothing I asked for--but everything I hoped for.

Almost despite myself, my unspoken prayers were answered.

I am, among men, most richly blessed!!

I got AA at the age of 22 in September. I had thick, curly, long hair. The doctor said things like: it could be stress, or my hair was too heavy so I should cut it. At the time I was suffering terrible allergies to my boyfriend's dog as well as enduring an abusive relationship with him which brought on strong feelings of guilt and shame. He was a shamer. So, I thought perhaps I was responsible, or he was, and I felt more helpless thinking I had control over this thing, because I couldn't stop being stressed. ATotalis came a year later at age 24. It regrew completely after a year, just as thick, but not as curly. Then another year later it was AT again. By this time I had two children, and my boyfriend who became my husband, was soon to be my ex. I had hair fall during 1st pregnancy, and regrow during the second. No rhyme or reason there. I remained AT from 26 to 28 or 29, then it was AU until I was 32. Hair began growing when I was 32 in all regions, and since last May I have been wig free with a full (although thin) head of hair, hair much like a three year old child's, eyebrows and eyelashes all in place. When the regrowth began I had already given up all hope that I would be getting my hair back. I had placed it in the Lord's hands and begun focusing on how I could share my situation with others and help them find an inner strength whatever their difficulties. I believe that one day the Lord will make us all whole, but honestly, I didn't expect it in this lifetime. I had no medicine, no vitamins, wasn't eating right, and I stay stressed just like I always have. How much longer this hair will remain is unsure. I try to enjoy it without concern for tomorrow. The freedom is wonderful, and I wish everyone could be experiencing it right now. If I must go back to my previous condition, I will (hopefully) use it once again to strengthen others and look to the Lord for my strength, and see it as an opportunity to learn more lessons. I see these lessons now as temporary, but what we learn and the growth we make as eternal, so I know it is not wasted. My experience with alopecia has been a hard lesson, I was humbled far beyond what I thought I could endure, I remember that feeling of utter and complete nakedness. I don't want to be there again, but if in time I must, I hope that I will learn at least as much as I did the first time around. I would not trade what I have learned, and how I have changed, for never having had alopecia. There is nothing at all anyone in the world can do to MAKE hair grow, hair is a miracle in my mind, it is a body part all of us need and want because it has a use far beyond what I had ever understood before. Each of us has a reason and something to learn while we endure alopecia. I'm very sure it's not the same for all of us. But I do believe that all of us are headed toward a place in or out of time where we will be whole with all our body parts (hair especially), because a good creator knows we need them, and wants us all to have their use. I know I appreciate hair more than the average "joe" and also, I appreciate my other body parts in a new way. I hope that each of us can begin to see this (HARD) learning experience as temporary and as one with a happy and fulfilling ending... or should I say a happy never- ending? We can't make or restore any part of our body, but my personal belief is that our creator will restore all we have lost and renew us for life which never ends. My greatest pain was when I thought I would have to live the rest of my life without hair, I didn't want to. I don't believe, anymore, that that is even a possibility. There are two new patches at the nape of my neck. At first I began to panic when I realized it was happening again. But I refuse to take responsibility for it this time, I can't grow hair, or make it fall out, I will leave it up to my Creator's judgement. I know that He's going to bring it back to stay at some point, that He is the only one who can, so it's His problem. My problem is just to deal with today's situation. I feel better, much more secure. I'll have a wig on hand in case the day arrives, and I know how to draw eyebrows, how to double line my eyes, and I know how to use my weakness when I'm afflicted to reach out to others and strengthen us both. I will not run, and I will not hide. I intend to use whatever happens as a crutch rather than a ball and chain.

—Roy Campanella

As I was getting ready for work this morning, I was thinking (My wife chimes in: "You're thinking! Now that's scary!") about all the posts lately concerning feelings of "setbacks" and the ups and downs we all go through. Maybe this analogy will help.

Think of our journey through our lives as a visit to a botanical park. We start out down the path admiring all the beautiful foliage, when suddenly we come upon a section where the sprinklers are not working, and the plants are wilted and ugly. We hurry on down the path trying hard to get away from that scene, just to find in a little while that the path turns back towards that section of the park. We think to ourselves; "No, I don't want to go that way, I want to continue straight ahead." However, the path does not allow that to happen. So we continue down the path, but now we are depressed and angry thinking we must see that ugliness again.

As we near the section, we are steadily getting more upset at the thought, when suddenly we are there. As we start to hurry along to get away, we notice there out the corner of our eye a splash of color among the ugliness. We turn and look, only to find the most beautiful flower that has ever existed. This flower was hidden behind the plants earlier, but now that the path has come onto the other side, we see it clearly.

Sometimes life is like that for me, and I imagine it is like that for a lot of us. I have this clear vision of where my life should be going, and I try to head there in a straight line. However, just like the path, life is full of twists and turns. Sometimes I seem to be getting nowhere, as I travel what seems like in a backward direction. But, as I seem to fall behind, I am granted a new perspective on the situation, and I find beauty among the ugliness of the situation. And just maybe I can take that new insight that I have gained to carry on down further along the path. I know that for me it took looking for a way to deal with my growing depression last year to finally search the Internet to find this listserv. Talk about finding a flower among the wilted plants! I appreciate each and every one of you on here, and hope each of you have as much luck in finding the flowers along the way as I have had so far here.

A few years ago at the Seattle Special Olympics, nine contestants, all physically or mentally disabled, assembled at the starting line for the 100-yard dash. At the gun, they all started out, not exactly in a dash, but with a relish to run the race to the finish and win.

All, that is, except one boy who stumbled on the asphalt, tumbled over a couple of times and began to cry. The other eight heard the boy cry. They slowed down and looked back. They all turned around and went back. Every one of them.

One girl with Down's Syndrome bent down and kissed him and said, "This will make it better." All nine linked arms and walked across the finish line together.

Everyone in the stadium stood, and the cheering went on for several minutes. People who were there are still telling the story. Why?

Because deep down we know this one thing:

What matters in this life is more than winning for ourselves. What truly matters in this life is helping others win, even if it means slowing down and changing our course.

One day an expert in time management was speaking to a group of business students, and, to drive home a point, used an illustration those students will never forget. As this man stood in front of the group of high-powered overachievers, he said, "Okay, time for a quiz."

Then he pulled out a one-gallon, wide-mouthed mason jar and set it on a table in front of him. Then he produced about a dozen fist-sized rocks and carefully placed them, one at a time, into the jar. When the jar was filled to the top and no more rocks would fit inside, he asked, "Is this jar full?"

Everyone in the class said, "Yes." Then he said, "Really?" He reached under the table and pulled out a bucket of gravel. Then he dumped some gravel in and shook the jar, causing pieces of gravel to work themselves down into the spaces between the big rocks. Then he asked the group once more, "Is the jar full?"

By this time the class was on to him. "Probably not, " one of them answered. "Good!" he replied. He reached under the table and brought out a bucket of sand. He started dumping the sand in and it went into all the spaces left between the rocks and the gravel. Once more he asked the question, "Is this jar full?"

"No!" the class shouted. Once again he said, "Good!" Then he grabbed a pitcher of water and began to pour it in until the jar was filled to the brim. Then he looked up at the class and asked, "What is the point of this illustration?"

One eager beaver raised his hand and said, "The point is, no matter how full your schedule is, if you try really hard, you can always fit some more things into it!" "No," the speaker replied, "that's not the point.

The truth this illustration teaches us is: If you don't put the big rocks in first, you'll never get them in at all." What are the 'big rocks' in your life? Time with your loved ones? Your faith, your education, your dreams? A worthy cause teaching or mentoring others? Remember to put these BIG ROCKS in first or you'll never get them in at all. So, tonight or in the morning when you are reflecting on this short story, ask yourself this question: What are the 'big rocks' in my life or business? Then, put those in your jar first.

HUMOR

A major portion or supportive psychotherapy really doesn't fall into the rigors of scientific scrutiny. Sometimes we do and say things simply because it makes us feel better. For some people just knowing that they have hit rock bottom is therapeutic because there is only one way out (up). Just recognizing something as absurd, being able to laugh at certain events in our lives, is the first step towards gaining control of life's circumstances. For some people, life's most embarrasing moment may signal an end to grieving and the beginning of acceptance.

The following are stories based on a "contest" for life's most embarrassing (or humorous) moments regarding alopecia areata. The stories help in supporting each other by promoting empathy.

I always dream of myself with hair (ahhh, if I could only sleep my day away!).... After 4 years of no hair, it's kind of strange for me to have these eyelashes and eyebrows back. When the lashes came in, the first thing I did was to buy some mascara. The lashes are white, so I darkened them with mascara. But the funny thing was that now that the real eyebrows are in (they are white too)- I realize that I've been penciling them too high! Maybe that's why I look at myself in the mirror and have this surprised look!

I have a funny story to share- well, at the time it happened, it struck me funny...Four years ago, when I first starting wearing a wig, my friend and I went out to spend the day together. She drove her car, and we had just stopped at the off ramp of the freeway, waiting to turn right. A woman driving her car behind us, had a child in the back seat of her car and was distracted by her son. Unfortunately, she didn't stop her car in time, and hit us from behind (we weren't hurt). In the split second we got hit, my wig flipped forward off my head into my lap! My friend knew I was wearing a wig. But, since I had just started wearing it(and forgetting I had it on), my initial reaction to seeing it in my lap was,

"Oh My God, It's a Rat!"

My girlfriend just about ran out of the car screaming, scared the woman who hit us, because she thought we were extremely hurt, and all I could do at the time was,(quickly (and I mean quickly!) get the wig back on my head) and sit there laughing so hard I could barely breathe!

This happened to me at the beginning of my "wig experience". Somehow, I feel that this experience has colored my way of thinking of wearing wigs- other things have happened over the 4 years, and I don't find them embarrassing, but funny.

Talk about bad windy days... A few years ago I was attending UMASS in Amherst. The dorm I lived in was co-ed and rather small. It has been a particularly rainy week so a group of people decided to play "mud" football. I obviously chose not to play, and my girlfriend and I decided it was time to do some laundry. We gathered our things and took a few steps outside. I knew it was windy, so we waited to move until it seemed to die down a little. Mind you, it was about 5:00 on a Friday night...traffic was crazy (the dorm was on one of the main roads out of campus). Well, we took a few more steps and off blew the wig....So...the football game comes to a complete stop as the wig rolls by. I faced the dillema of putting down my laundry bag in the mud - or waiting for the wig to come to a stop. Well, I took too long to make the decision - and it blew a little further - this time out into traffic. Cars were actually swerving so they would't hit it!! Thank god for a guy who happened to be jogging by - he actually crossed the street to retrieve it!! Anyway, he brought it back over to me and I put it back on. I was a little nervous about the reaction - but I think it was so funny the way it had happened - people reacted better!! They actually applauded when I put it back on!!

I remember a time that my husband and I still laugh about. It happened one night when we were in bed sleeping. I heard a noise in the other room and nudged him to ask him if he heard it. Well, he didn't answer me which is normal because he is a sound sleeper. I sat up and looked at the doorway and saw a shadowy figure of a man standing there. I screamed and threw the covers over my head! Now, it happened that I was nudging the pillow next to me and not my husband and it was my husband I saw in the doorway, but can you imagine that all I could think of was that the robber would see me bald???

The story starts when I was in the 8th grade. I had AT at the time. I wore wigs, ugly ones at that. I had a boyfriend that I was sooooo in like with (I thought it was love then). We only had one class together. Math. His name was Mike. Well, Mike had a best friend named Chip. Chip also was in this Math class. One day I walked into class and sat down behind Mike. I was waiting for Mike to finish a letter he was writing to me. Chip, Mike's best friend came in the room. His seat was behind me. This was not pleasing to me because he liked to tease me and Mike. Anyway, Mike decided to thump me in the back of the head this paricular day. And of course my wig went flying across the room. Right over my boyfriends head. It landed right below the chalk board. I froze. I couldn't believe this was happening to me. I jumped up, grabbed my hair and shot out the door to the bathroom, where I balled my eyes out. Another friend came to check on me and told me what happened after I left. When Chip thumped my head, and my hair went flying, he thought he had knocked my head off. He passed out cold, the school nurse was called. Everyone was so concerned about Chip passing out. No one noticed my hair flying across the room. So this tragedy turned into a comedy (for me at least). Poor Chip.

I work in a flight department where we schedule flights on our private aircraft. I am very close to everyone here - people knew about my hair loss -but no one had ever seen me without "it".

I don't know how hard this will be to picture, but I had walked out of the office through the hangar to go home since it was windy. Our maintenance guys were performing an inspection on an airplane. Several of them were inside - being talked to by two on the outside who were wearing headsets. Well, I waved goodbye and opened up the door. There came the biggest gust of wind - and off blew my wig. I had to run back inside the hangar to catch it - it looked like tumbleweed rolling... I guess one of the guys outside the plane caught what was happening - but wasn't sure exactly what the situation was. So, through their microphones he tells them that I let in an animal when I opened the door...and then in I come shiny head chasing after the "animal" - so, he tells them there is some stranger chasing after the animal. Well, then I stomp on the wig to catch it - and quickly put it on my head - not looking at anyone and ran out. I guess at this point, everyone in the plane had moved to the side to see what was going on - and then it clicked with them...

So, I walked out through the guardshack, trying to gather my senses - and stopped to talk to the guard. He was looking at me kind of funny - and I was wondering if he saw the whole thing in the camers. Well, I got into my car and looked in the mirror - in my haste to throw the wig back on - the entire front was tucked under. What a loser I looked like!!

The next day I went into work and no one said anything so I felt much better - About 2 years later we were all out for drinks and one of the mechanics starts..."Hey, remember that time when we were doing that inspection and Dawn was chasing after her hair..." All of them start laughing - you should have seen my face - I couldn't believe it!!

TIME

“To realize the value of ONE YEAR, ask a student who failed a grade.

“To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.

“To realize the value of ONE WEEK, ask the editor of a weekly newspaper.

“To realize the value of ONE HOUR, ask the lovers who are waiting to meet.

“To realize the value of ONE MINUTE, ask a person who missed the train.

“To realize the value of ONE SECOND, ask a person who just avoided an accident.

“To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics.

“Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time.

“And remember that time waits for no one.
Yesterday is history
Tomorrow is mystery
Today is a gift
That's why it's called the present!!”

What coping skills do I use? I'm not sure this qualifies as a skill, but my answer is: TIME.

I've had alopecia for 5 years this month. Time changes things. I am no longer super-sensitive about people looking at me, even staring at me. I can't remember the last time someone stared at me. It was quite some time ago...I think it was when I still had my own hair, but it was thinning so badly, people couldn't help but stare at it.

I no longer feel like my head is the center of attention. I fit in with everyone else again...yes, I'm wearing a wig, but it looks very good. It's not attracting any extra attention, no one is paying more attention to me because my hair is different.

Truthfully, when my one girlfriend seemed embarrassed by the possibility someone may touch my wig, or I may lose it, I found it extremely funny. The scene didn't scare me, it didn't worry me, I wasn't embarrassed by it...I found it amusing. I was AMUSED at my friend's discomfort! Can you imagine? Because she has never accepted the fact that I have to wear a wig...I have, but she can't! And, by this time, 5 years of wearing a wig, I have no patience with her anymore. I do call her my best friend- we have a lot in common, and have been friends for almost 20 years, but, it's almost as if she's the one with the alopecia, not me. She totally CAN'T handle it. However, because she IS my friend, I can get beyond her shortcomings...my having alopecia is one of 'her' shortcomings! I know you may be thinking, why would I remain friends with someone like this, someone who can't help me get through this,etc. Because she shows her love in other ways...I don't need her to help me get through the daily living with alopecia- I have others to help me with that and be here to support me if I need it- she just can't do it.

So, as I said, I think the one thing we all have on our side is 'time'...the longer we have alopecia, the easier it is to deal with. I know I am more comfortable with myself now, I've learned new makeup techniques, wig ideas, and if I do have a "why me, day", well, that's what you all are here for.

I have been living with aa for a total of 32 years. As a 2 year old my hair fell out in patches and by age 4 I was AU. Had my first wig at age 5 and have had one ever since. Every Dermatologist and physician related this all to stress. I can only be thankful to my family for treating me as any child, with unconditional love, limits and a moral upbringing. I often wonder what I would be like if I had gone through my childhood and adolesence with a full head of hair ( and body), I'm not sure I would be who I am today. Children are cruel and unrelenting with words and actions towards those who are different. I shudder at times when I think about incidents that have occurred. I took cortisone at age 8, imagine 125 pound bald headed 8 year old. Ugh. Creams, tape and glue to keep things in place were the norm. I found comfort in sports. My red head band was always in place. Ignorance of others was a common obstacle. Some children were not allowed to play with me because their mothers didn't want them to catch my disease. I feel for the children experiencing aa, it sucked. Believe it or not, it still has it's moments at age 34. Was told by a friend the other day, that one of my co-workers was making fun of my wig. (Had just got a new one and still had that "wiggy" look to it I guess.) This woman is a 50+ nurse with a hearing impaired daughter. Go figure. I wrote my final English paper senior year in high school about how my aa. Most or all of my classmates knew, because not a year went by without either my wig coming off or someone trying to pull it off. (frequent game among my classmates) But my premise was to say, hair is cosmetic. I have 2 arms and 2 legs and a brain, look past the hair and see me as a person. Life is hard with this condition, others don't need to make it harder by judging your appearence. Other aa people can relate, those who have not experienced it can only imagine how it can be. One of the worst offenders during high school in her quest to make fun of me, called me 3 years post graduation to ask about aa and where I purchased my wigs. She was losing her hair at age 21. She was finally able to say she was sorry for all of the nasty things she said and did and wanted to try to understand what was happening to her. Her hair did all grow back after about 2 years, lucky her. I still to this day, sport a Ben Franklin kind of doo under my Diana cut. I finally met a wonderful man when I was 23 after college. He had heard I had aa and went to the library to research it. Bringing it up to me he wanted to know all about it and said it didn't matter. We've been married for 10 years now and have 2 children.

I grew up in a large town, Portsmouth Virginia, but moved frequently due to family problems, divorce, even military transfers. There was always a new school, class, and neighbors for me to tolerate their first reactions. At least four different elementary schools, and the same number of high schools. I played possum and even ostrich, and hid as long as possible.

Eventually the word got out anyway... 'that new quiet bookworm boy is bald... did you hear? Not a hair on his head!! I hope its not catching... I hope he hasn't got cancer or anything.'

You think I'm quite adjusted, huh? Well, maybe I'm adjusted to the hair loss. Now.

Thirty five years of total non-remitting loss is a long time *NOT* to adjust! Father time alone would have worn me down by now if nothing else!

I consciously stop myself from grieving about hair anymore. It only starts me wondering and thinking, and getting desperate ideas. Of course, I'm middle aged now, and walking around bare in the World. If people stare, point, or even whisper about me, I smile, knowingly. Let 'em think what they will. I can't educate the whole World, let alone those who don't really desire it. If they seem genuinely interested, I may actually talk to them about alopecia briefly. (Interesting choice of words; oh, how I wish alopecia *WAS* only briefly!) If they are just sideshow attendees, I cruise right by them.

I'm still quite scarred from the emotional trauma of it during childhood however. I think I'm mal-adjusted! (grin) Many would agree! especially the ex-wife!! (very evil grin)

(Ever notice how a spoonful of humor makes the bitter pill tolerable...? or is it just hiding the pain...?)

PSYCHOLOGICAL STAGING

I've been in a funk lately, haven't found the courage to write for a while...been a difficult few weeks. First of all, thanks to all of you that have written lately...your thoughts and words really do mean a lot. I am trying so hard to deal with this positively...so hard....but I'm just not doing very well. I can put it out of my mind for a time, but it just comes back. To not think about it....is that denial or something? Cant figure it out. One minute I think I'm doing OK, then something new happens, boom....I'm right back down again. The latest is that I've noticed some brows and lashes coming out. I mean...I've read about it, thought about it, but when it started happening? WOW was I unprepared. It was almost a "surreal" feeling....like it was happening to someone else.....those aren't my lashes in the sink....they belong to someone else.... I was really surprised at how badly it effected me. I see the new doc on Monday. Just wrote her a letter introducing myself, spelling out who I am, what I'm going thru, what I'd like, etc. Made me feel good doing it, and at the same time kind of silly since its as if I'm having to beg someone to take care of me. At least I've given her the chance to know what it is I want. The scary thing though is that I am putting so much stock in this appt., if it falls apart, I may too. I just cant imagine though, at this point, how I can walk away not knowing something more than I do now. I have to believe that. I need something concrete to go on. Anything. Keep your fingers crossed for me.

ACCEPTANCE

I think there is an extra dimension to alopecia for people who have had this since childhood...one of our members said, she would have loved to know what she would have been like if alopecia wasn't a part of her life. I don't have that part of alopecia- I know what I was like 5 years ago...my life hasn't been altered that much, except for the fact that I now wear a wig- I can't think of anything I do differently now than before alopecia- I never went swimming under water...hated it. I always wore jackets with hoods, because my ears always hurt when the winds blow. Only went on rides at amusement parks when forced to go! (so, I'm a poop...always have been, always will be!)The major thing that has changed for me is that I no longer get haircuts, don't buy shampoo, don't worry about the gray showing. And have to save money up to get a new hairdo...wigs are more expensive in a lump sum than a haircut was.

I am having no problem living life to the fullest- things are good here too, I'm happy to say and alopecia is but a small part of me. I've been AU for about a year and a half... to tell you the truth, since I've turned AU, it's a lot easier for me. If I have to have alopecia, this, for me (maybe not for others) is preferable...easier- don't have to worry about my hair showing through the wig, I like the eyebrows I draw on better than my home-grown eyebrows, it's great having smooth legs, etc. If anything, I would wish for my eyelashes back...only because dust seems to irritate my eyes easier now, but there's always the chance they will show up for a bit. Had them last spring, maybe they'll make another appearance.

THERAPEUTICS

OPINIONS ON TREATMENT

Although some might suggest that you should try this treatment or that, I would recommend to just shave your head and get it over with and move on with your life. Having lived with Alopecia for over thirty years, it wasn't until four years ago that I finally shaved mine.

Although some forms of this disease comes and goes, there is no way of telling to which level you will go to. I've been through most of the supposed treatments that you've read about through the server, with little or no success and with a tremendous amount of pain. Both physical and emotional. The physical pain ranged from the burning of the creams that are used, to cortisone injections directly into my scalp and eye brows, to scalp biopsy's.

The emotional aspects were far worse than any of this physical pain. The years of hair fall out. Worrying if anyone would notice my bald spots, and when I did wear a wig in high school, would someone knock it off or were people looking at me and my wig? My latest bout began about five years ago, and at that time I went on prednisone, gained over 80lbs and when I stepped down off the drug my hair still fell out. It was at that time I finally decided to shave my head.

It was by far the best treatment I've ever undertaken. I'm no longer concerned about my hair and if it did decide to start to grow again, I'd shave it off.

The facts of this disease are this. The medical profession has no cure for this disease. PERIOD. Besides the physical pain of the current "treatments", I don't believe that any of these chemicals that people are putting on or into their skin or taking internally are good for you and may cause other more serious side effects.

It took me over 30 years to finally come to the conclusion that my hair growth wasn't important. If you think about it, self esteem has nothing to do with hair growth. It's you as a person that is far more important.

SADBE

SADBE is a chemical compound that was prescribed for me by my dermatologist after 90% hair loss on my head. At that point I shaved my head and had been like that for almost a year when I went to this doctor. I had been to a few others and had tried some other treatments that did not work. I have to go to a special pharmacist in downtown Memphis to get the SADBE. The pharmicist mixes it up on site. When I first started on the SADBE I put it all over my head. I applied it every three or four days. It seems to cause an uncomfortable burn. Lymph glands around my head and neck swelled up to golf ball size. I was pretty miserable. The itch was beyond belief. After five straight weeks of use, I quit using it. Two weeks after I stopped, my whole head was covered with hair. I couldn't believe it. It all grew back brown and curly. Before it was blond and staight. It grew without any loss for about a year and four months. Then, I started losing one or two patches, dime to quarter size. I used the SADBE about three times then stopped. Two weeks later the hair grew back. It always works. Now I get a patch about every three months. But now you can rarely see them because I have plenty of hair to do 'creative combing' with. I find that keeping my hair short I have less problems. At the rate that I use the SADBE I can never even use a half a bottle a year. I then renew it because it gets stronger with age because of evaporation. I first saw this treatment used on a twelve year old girl that was in a support group. It works for her also. This is my experience with SADBE. I would be interested in knowing how many of you know about this? By the way, I am 35 years old and female. I have had hair now for two years. Just a few spots here and there.

SADBE has been around awhile. It is used and works the same way as DCP and DNCB. It is a topical sensitizing chemical to induce contact dermatitis, which I think by theory can help direct the immune system attack away from the hair follicle which can allow regrowth. The best candidates for this type of treatment are the ones that probably have the most uncomfortable reactions i.e. rash, itching etc. It is my understanding that the topical chemical itself does not directly affect hair regrowth, but directly may cause the dermititis, rash, etc., that aids in hair regrowth. Not everyone's immune system will react to skin sensitizers, just as not everyone has the same sensitivity to poison ivy, which also could promote hair growth, but is not a good substance to be encouraging sharing ones life with.

Many people have mentioned using contact skin sensitizers like SADBE, DCP or DNCP and have complained about the uncomfortable aspect to the reaction they get...blisters, rash, itching etc. It seems to me that they might be the best candidates for regrowth with this type of treatment, whereas other people pour the stuff on your head daily and get no irritation or dermititis at all, reducing the chance of effectiveness. Of course this type of treatment is just that, a treatment, not a cure, and is the type of individual decision that is based on how much trouble one wants to go to for attempting any sort of regrowth.

DPCP

About the side effects of dpcp:

Don't underestimate them! After a few hours my head is red, hot, the skin feels swolen and it burns like hell (sorry for the laguage). The 2'nd day it feels verry irritated, it's still red and i constantly want to scratch my head. In the days following the itch is becoming lesser and the skin becomes scaly. (Imagine a bald guy with dandruff). And then it's tuesday again and the show starts all over. Next to these effect there's another side effect: The irritated reaction is not only occuring at the treated skin, but also appeares on other parts of the body. I my case on the palm of my hands, in the neck and on the face (where my beard used to be).

STEROIDS

Steroids work for some people to re-grow their hair as long as they continue to ingest or have injected the steroids. Many report, however, having to play "catch up" with spots that pop up around the injected sites. For others, it can work for a period of time them stop working. For others, they don't work to grow hair. Side effects of steroids can include immunosuppression which can open one up to a host of opportunistic diseases (including cancer) and infections, skin atrophy, bone (including cranial) loss, pain (from the injections themselves), hypertension, adrenal suppression (which can become permanent), emotional lability (ranging from mania to depression to paranoia and psychosis), weight gain - just to name a few. Many people also experience a phenomena called steroidal rebound where once the steroidal treatment stops the hair falls out quickly. Many people here have reported steroidal use leading to successful hairgrowth then running into the steroids not working. *Many* of these people have wound up AT. Many people here have reported that the hair near the injection site would fall out.

I hope this helps. Steroids are often prescribed as a first line treatment by dermatologists despite the risks and long term low success rate. Personally, I've chosen not to go this route because of becoming informed about these risks and valuing my health over a possibility of some temporary hairgrowth.

OTHER PROBLEMS

DREAMS

I don't consider that affirmations in whatever form they take (e.g., dreams, etc.) are "flakey". I, too dreamed myslef with hair for approximately three years. I am now AU for nine years and no longer dream of myslef with hair. As a matter of fact, most of my "hair dreams" concern losing my wig in public, etc. I do NOT, however, consider this as a denial of hope for reversal of my situation, but only as acceptance.

Yes, I've had several dreams in which my hair came back. In one, it was short and dark brown, just like it used to be. In another, it was coming back only at the front of my head. I was looking in a mirror and, far from being distressed, thought calmly, "OK, this is a start."

Funny, isn't it, how hair is connected with feelings of shame? I mean, it's just a buncha dead protein. In my case, my AU is supremely ironic and a true illustration of the saying, "Be careful what you want. You may get it." Until this year, I had more hair than I knew what to do with. Literally. Not only did I have very thick head hair with lots of body, but I had hair in other places that I wasn't too crazy about, such as upper legs, upper lip. I had electrolysis several years ago on my upper lip, and I felt ashamed that I was a relatively "hairy" woman. I used to wish body hair would go away. Ahem. I try to combat this sense of shame at being bald by smiling, being a bit more outgoing, trying to show people I am comfortable with myself (which I'm not, but let's pretend). Having this condition, or disease, or whatever you want to call it, is not shameful. Breaking your word, hurting a child, running out on your debts - those things are shameful.

I do prefer calling this a condition. Sure, it's a euphemism, but I feel so darn healthy that "disease" just doesn't cut it for me ... unless I'm asking someone to contribute to NAAF, heh, heh.

EYEBROWS AND EYELASHES

I don't know of eyelash glue that isn't a latex base except spirit gum which used to be used as a theatrical adhesive for false eyelashes. It will not work on skin, however. I've tried it. Apparently it only works to attach eyelashes to real lashes. I have used both Duo and Ardell adhesives. I know they can be irritating if you get it in your eyes. It takes practice to be able to apply just a thin line of glue. I dab on tiny dots along the edge of the eyelid and then connect the dots with either the tip of the eyelash tube or the dull end of a toothpick. You want it just above the bend of the eyelid. Close one eye and look where the eyelid meets the lower lid. Just barely above that point is where you dot the adhesive, and not too close to the inside corner of the eye. You don't want to effect the tear duct. As I mentioned before, I use an eyeliner (dark) first, all along the edge of the upper lid - then when I apply the adhesive and the eyelash, the dark eyeliner hides the applied edge of the false eyelash. Since it doesn't show, the placement of the eyelash doesn't have to be exactly perfect, and as you practice it, it will become easier and I found also that my eyes were less irritated by the adhesive as time went on.

I have tried false eyelashes ONCE. I hated them. I don't think you can get lashes for the bottom, only those single lashes but they need to be applied to existing lashes, so they won't work. I just wear black, waterproof eyeliner pencil (by Clinique) and I line my top eyelid and smudge it. I also use it for the bottom lid. People never notice that I don't have lashes, in fact even my optometrist didn't know until she looked at my eyes in the microscope machine and then "informed" me that I don't have lashes (no sh--). Also for my eyebrows I use a brown waterproof pencil by Revlon. I have tried others but this one seems to work really well. I wear my bangs extremely long so you really don't see my eyebrows anyway. I think penciled eyebrows look fake no matter how you apply them. When I go out and know that I'll be sweating I usually take both pencils along with me for quick touchups. I don't have oily skin so usually my eyes stay on unless I'm sweating.

After I lost all of my scalp hair I used to say "well, thank god I still have my lashes". I've learned not to say things like that anymore. Not that I believe in jinxing or anything...... :)

I remember [a lady] that had her eyelids tattooed only to have her her lashes grow back (after the procedure)..... When I heard that I decided to try having my brows injected (yes, cortisone again, what was I thinking??), no eyebrows, the only thing I got were deep wrinkles that made me look about 90, which lasted for 4 months or so. That was the first thing I have tried in about 10 years and look what it got me! I have recently tried the Nioxin and was seeing some growth but spring came and it all went again.

When it comes to eyebrows I actually paint them on with liquid makeup. I use a fine (5/0 - 15/0) artist brush that you can get at any art supply store, and I use a liquid, preferrably waterproof, eyebrow or eyeliner. It usually comes in a bottle or tube with a brush inside, but I think the brush is too big for hair thickness. I also get a small flat container to mix the liquid in. You can get several colors to make different shades of hair for a more natural look. Mix the liquid with a little water to get a good easy to apply consistency, and just brush on with short smooth strokes. And remember practice makes perfect. As to getting them on straight, you can get templates to help you with that. I usually freehand draw a thin line with an eyebrow pencil just to help me stay in line when I'm doing the brush work. They take me anywhere from 5-10 minutes to do, but it took me longer when I first started.

Helpful hint!!! Look at people and study their eyebrows, natural ones, not plucked or models, and see how they grow naturally, where they start and where they stop. How high they are in relation to the eye, and so forth. My eyebrows used to look totally fake until I really studied other people and learned how to make realistic looking eyebrows. Once you figure out where the brow should go, then start checking out the different styles , plucked, shaped, etc, to decide what would look best on you! A makeup consultant can also help you figure out what shape of brow will enhance your features. You can also find out good information from magazines too.

LEATHER COUCH

We have a leather couch and my husband cracks up when my head "sticks" to it after sitting to long (like your legs stick to a car seat in the summer). It makes a kind of crinkling noise when I get up.

ON TELLING SOMEBODY

I decided to that telling in the beginning, it was easiest for me. I would wait for an opening line of some sort, only after I thought I would like to see them again. It's not worth telling if they had no potential. I wear a suction hair prosthesis, so they have no idea at all unless I say something about it. But I usually start out with something like, (wait for an opening of some kind) "that reminds me....(pause and take a deep breath) have you ever heard of Alopecia Areata?". After I have said that there is no turning back, but make sure you make it clear that it is not contigous. And don't refer to it as a disease.

That guy I met that I really like, I emailed him. He told me before he got to the part of me saying I had Alopeica Areata, he thought I was going to tell him I was really a guy in disguise. He was glad to hear it was "only that and what was the big deal. Here is a copy of what I sent him:

And now that I've met you.....there is something that I would like you to know about me. This is something I struggle with anytime I meet someone new, because some men have a hard time understanding what I'm about to tell you.... some find it to be no big deal. When you said you liked what you saw, that should have been my opening to tell you this face to face, but I couldn't find the right words to start with.

First let me explain that this is NOT a contagious condition. You cannot get it, nor can anyone else get it. If it were transmittable, I would have jumped off a cliff by now. This condition falls into the auto-immune family and is an allergy. My body is >allergic to my hair. I know looking at me you would not have known it unless I told>you. There are people I work with that don't know. My hair prosthesis is real human hair (very expensive), it is not the traditional wig. It is a suction hairpiece and >is not something I sleep with. I've only had this condition for 3 years, and once when I was in my early twenties. But back then it all grew back and I thought it would not fall out again. Three years ago....that's when my life changed. For some reason I knew when my hair started to fall out, all of it would. And it did, along with my eyebrows and lashes. My eyebrows and lashes have grown back, but not all my scalp hair. There is no cure, yet. I did not do anything to cause this to happen to me, and there's nothing I can do to reverse it. About two or three percent of the population has this condition; men and women from ages 0 to 99.

I'm not sure what else to tell you.....you can find information on the web about it. There is a national foundation called "NAAF" (they don't have a web page yet), they >distribute funds to research with hopes of finding a cure. I'm convinced that they'll find it only by accident; and it'll be something like "Don't eat popcorn on Saturday nights" or something crazy like that.

This was very hard for me to accept; and I am grateful that it is not life threatening. Never in a million years did I think my life would go in this direction. I also know that some men could not accept being with a women who has this condition, and that's okay. I just hope you don't feel I was playing a game with you, because I am not. I just want you to know about this up front so I don't have to think about it, or try to figure out when I should tell you.

Now that I said all that, what are your thoughts?

PERCEPTION BY OTHERS

About a year after I got AU, I met the lady who is now my wife. About our third date, I asked her if it bothered her to be seen with a totally bald man. She was startled at the question and assured me that it was a non-issue. Then she got up the courage to ask me a question. She was very concerned that I might be bothered that she is five years older than me. It was my turn to be startled and I assured her that I had never given it a thought. We each were worried about something that didn't matter to the other.

After all these years, my AU still doesn't bother her and the age difference doesn't bother me. However, human nature being what it is, I get the occasional twinge about what OTHER PEOPLE might think about the beautiful lady and the bald guy. And my wife admits to the occasional twinge about what OTHER PEOPLE might think about the woman with the younger man. Sigh! It's not easy to be human.

REJECTION BECAUSE OF YOUR APPEARANCE

I'm 30 and single, and I have fluctuated between AA and AT ever since I was 12. Hence, I've had alopecia for all of my dating life. I've read the postings on alopecia and dating, and how it helps weed out the good and bad men. And I can very much identify with the anxiety of telling a romantic interest that am bald and wear a wig. For me, it hasn't gotten any easier as I have gotten older, as a matter of fact, it seems to me that men were much more understanding when I was younger.

Anyhow, this past week I was in San Francisco for a conference. I met one of the attendees who is getting his PhD in social work. He seemed to be very understanding and knowledgeable--he's a social worker for goodness sakes! He pursued me relentlessly, took every opportunity to shower me with compliments and attention. He wanted to keep in touch and start dating. After a full day of dining and sightseeing, he started getting cozy and went to touch my hair. The automatic flinch! You know what I'm talking about ladies! You know how when a man goes to run his fingers through your hair, and you automatically jerk away! Well, this really intrigued him. He insisted on knowing why I wouldn't let him touch my hair...was I wearing a weave? Was I wearing a wig? I calmly explained to him about alopecia and that I wear a wig. His reaction was very understanding. He listened, and apologized for touching me and invading my personal space. Then, without any warning, I just burst into tears. I was so angry! So angry! So angry that I constantly have to explain this blasted disorder to everyone! And even more so, I was angry that I was angry. For so long I have tried to accept alopecia, and I am farther on the road to acceptance than I have ever been. But that moment made me realize that I am not as far as I thought I was. I am so tired of having to explain this disease to everyone. I am so tired of being embarassed about it, and feeling ashamed about it. I calmly explained this to him, and he was very polite and stayed with me, and nothing seemed different. He was still very complimentary and still wanted to date.

Well, the next morning he came to my room to say goodbye to me before I checked out of the hotel, and it was a totally different story. He gave me some song and dance about how busy he is with school now, and how he needs to maintain focus, and that he basically doesn't have the time to date. Basically, he was blowing me off. After he finished his sorry little speech, I said "fine...goodbye", and left him standing in the hallway. I was fine until my plane took off, and the tears just started flowing. I wasn't crying for him, I barely knew him. I was crying for myself and the alopecia, and how at times it all just feels so unfair. Being rejected is one thing--we've all been rejected. But somehow when you think you've been rejected because of alopecia--it feels a million times worse.

I know, I know, he was one of the bad apples, it's a good thing that I found out what a jerk he is early on...but it still hurts. Just needed to vent...

I was baby-sitting my three-year-old cousins (twin-girls) called Lova and Annea. They are in a way like my own little sisters, because I have spent so much time staying with my aunt and uncle in holidays, etc.

We had a great afternoon, and after supper we sat down in the sofa so I could "tell stories." They love that, they always want me to tell them "true stories" eg things that really happened to me or someone else. After a while, one of the girls asked me to tell them about my "make-believe-hair" (I've told them a few times before that I don't really have any hair, and that the hair they see, isn't "real hair" only "make-believe.") So because they asked, I told them that my hair had fallen off when I was younger; that I was very sad about this, and that I wear the"make-believe-hair" so that people won't think I looked strange. Then I tried to be cheerful about the whole thing so that they wouldn't get worried or anything like that.

After a while though, Lova asked me if I could take off the "make-believe-hair." I told her "yes," but I wasn't going to do that right then. But then they both started pleading for me do it, "But you took it off before, and wore a hat!" "..... well yes... but if I take it off altogether, you will think it looks really strange!" "No, no, PLEASE take it off!!!!" I don't know what possesed me to give in to them. I really shouldn't have done that. I guess I thought that since they are small children, they would be intrigued, nothing else. So I took off the wig.

Both Lova and Annea looked absoulutely horrified! Annea turned away and covered her eyes. I put the wig back in a second, realising that this was a horrible mistake. I tried not to show how hurt I was, and said calmly:

"Did you think it looked very strange?"

"Yes......" they whispered. "I got scared..... Hanna, you must NEVER do that again!" They were truly shocked. I felt absolutely horrible.

"Well now you understand why I wear the "make-believe hair" then! Why you mustn't pull it all the time!"

"Yes, you must never take it off or you look like xxxxx!" ( Can't remember the name, but it sounded rather like a monster out of a cartoon....)

We talked about this for a minute or so. They were still upset. Eventually I told them that I had actually taken the wig off in front of them when they were little babies, and that at that time they had started laughing. (this is true). That seemed to help, and eventually they were convinced that I had in fact looked funny, (like some other character out of a childrens' videofilm....) As far as they were concerned the whole thing was forgotten in half an hour, but I still feel very bad about it. First because I was so stupid to take off the wig in the first place; secondly because it felt so dreadful that they got scared! And this was when I was wearing false eyelashes and make-up.....(eye-brows)! This is truly depressing...... Because I have so light (Scandinavian) features, I really look very strange without hair. I'm rather tall. I could probably play a convincing alien in StarTrek, without any make-up at all!

Reply:

The experience you had with your cousins must have been so difficult, but it sounds as if you handled it well, under the circumstances. Although they are awfully young, you seem to have effectively dispelled their initial fears at the sight of you sans hair. The advantage to being open with your cousins at this early stage, however, is that you can be a great influence in the way that they perceive people who are different from them-- these kids will end up learning excellent lessons in empathy and acceptance from their favorite storyteller!

In terms of love when it comes "for better, for worse" you need someone there for you. When my husband asked me to marry him after dating for about 1 1/2 years I told him I had something I had to tell him. We were talking on the phone one night and I proceeded to tell him for about 3 hours about my hair loss problem. Like he didn't know cause at the time I didn't wear a wig but my hair was very short and thin. He could see my thin hair but ya know, he said it was "me" he was marrying. He didn't care about my hair. He said he thought it was something "serious". He knows I struggle. I let my lack of hair hold me back from doing certain things. Ok, I admit it! But you really saved yourself a lot of unhappy years of marriage with someone that can't deal with the unexpected. Rejection is one thing but rejection from a divorce is hard. I've been there. It's good my husband doesn't care about my lack of hair cause now that I'm in my 40's, I'm loosing my be-hind. It was there a few years ago but think its somewhere where my hair is. Ya need to a guy to love you hair or no hair. I can hardly believe that there are many guys out there that aren't all sold out for the long, beautiful hair. Cause when it all comes down to it, when we get in the late 60's & 70's, most of them will have caught up to us. So many older women at my church wear wigs. It's kind of funny cause most of them sit together. My sister told me she was reading a book where the author said, "Life is under Warranty until 40, then everything goes bad."

Wanted to tell you that many years ago my neice walked in on me when I was putting on makeup. I did not have my hair on. Well, she was 3 at the time, and when she saw me, I thought that she might run out and be damaged for life or something, but my mother who came in after her just said "Aunt Sue looks different, doesn't she, what do you think about it?". My neice just said "she looks beautiful". Nothing was ever said about it since. That was 10 years ago. When I had my own kids I used to think I would traumatize them if they saw me without hair and in fact, I wouldn't even let my infant daughter ever see me without hair. If she would get up in the middle of the night I would make sure my hair was on before I went to check on her. Isn't that so silly? When I finally did let her see me, she was about 10 months old, it didn't even faze her. Mom is mom, hair or not. Now my son gets a little disturbed when I'm not wearing my hair, he's 3 and he'll tell me to put my hair on. He says I look better with it on. I guess I have to agree with him there! You're right about it being harder to tell children. I can tell any adult about it, but when it comes down to discussing it with my kids friends, no way! I wonder why that is.

As far as your special guy goes, he sure sounds like a winner. I met my husband while wearing a wig and having no hair at all. For some men hair just isn't an issue, it really is alot about attitude. We have been married for 10 years and I still don't walk around without my hair on. I try to let him see me without hair as little as possible, but not because it would bother him, but because it would bother me. You see, you have to do what you feel most comfortable with. For me, that is what works, and that is how I feel most attractive and happiest.

RUDE COMMENTS

Unfortunately, I don't feel too happy. I feel a little angry and hurt because of an incident that happened in school today. I am losing my hair. However, it's not in patches or totally gone but justgetting VERY THIN!!. It is so thin that I have to either wear a hairpiece or pull it back. Well, lately it has thinned so much that you can see lines all over my head when I pull it back. (These lines are my SCALP).

Today I did not wear my piece to school but pulled my hair back. While in assembly, several young elementary students ask me what the lines were all over my head. Their question did not bother me, so I told them that the "lines" were actually my scalp. They asked how come it looked that way, and I told them that my hair was thinning. Well, I can understand their curiosity and their question didn't bother me too much. What bothered me was the fact that 2 of my co-workers heard their question and laughed hysterically!!! I ignored them and looked the other way but felt like crying. A few minutes later, one of the women walked up to me and said, "Maybe it's time you tried Rogaine, " and laughed again. Boy, I wanted to slap her. She is the same woman who makes jokes about one of the male teachers who has lost most of his hair.

These same women know that I have to wear a hairpiece whenever I wear my hair out, and they always comment "Oh, wearing your hair out today". Then they stare at me like I have 2 heads. I know I shouldn't care what they think. But, they really got to me today.

Reply:

This email message certainly aroused a great deal of emotion among our participants. These incredibly insensitive women may have been dreadfully jealous of you. People like that will put you down to make themselves feel better. They probably have no self-esteem. What makes me sad is that these people are teaching our children!

Everyone has to react to life's experiences their own style, and you do what is right for you, but make sure you aren't leaving a need to stand up for yourself unattended. I think what this story really illustrates is incredible weak character on the part of the two idiots that you work with, and I think they need to be accountable in some way for their personalities, or lack of. If not for your own sake, but the rest of the world that has to be subjected to such shallow interaction with them. You owe your two co-workers a confrontation of some sort to let them know that their attitudes and behavior are truly pathetic. Maybe future encounters by these two with you and the rest of the world will be better served if they are enlightened to your feeling and pain. Just always remember that people like this are great examples and illustrations for ourselves to reinforce what we aren't and never want to be or become. Use this experience to become a better person, and further away from the type of person they are, and let them know that maybe they helped you in this respect. I can honestly say I don't feel sorry for you, but feel VERY SORRY for these two pathetic people. "Revenge" shouldn't be a motive for a confrontation, but that shouldn't be confused with standing up for yourself and making other people accountable for their actions. Without any sort of confrontation these co-workers will not have anyway of knowing how their actions HURT someone, so the degree of diplomacy is up to the messenger.

Maybe speaking to your boss about it may help. You might want to mention to them that alopecia can strike anybody at any time, and it could happen to them. You can also talk to your nicer coworkers and recruit their empathy. Alternatively you could have answered like this, when other coworkers were around, "Do you think it is funny to laugh at my hair? Do you think your behavior is setting a good example for the children of this school? It is much better to have a little less hair than an ugly heart and spirit like you! Another retort would be, "If it makes you feel to ridicule me, then I am happy that I made your miserable life a little bit better."

SELF-ESTEEM

I always know I have a wig on, I think that is becuase my skin has become sensitive since the AU. I'm looking forward to the vacuum wig so I can stop wearing these squirrel caps. I wish I was brazen enough to not wear them, I don't at the beach or swimming at the pool, but feel exposed and vulnerable any other time (except at home which is my safe haven).

I told my husband that since I have fake hair, tatooed eyebrows and recently applied fake (but beautiful) finger nails, to save him money. I might as well be completely plastic and go for the works, I want the boobs, the facelift and the liposuction. He said it would be hard to see the downside of the boobs and the rest was ok with him if I thought it would help. I'm not going to do any of it, although the facelift sometime in the future sounds good, but where would they hide the scars!

Even though he gulped and tried to hide his dismay over all the money those procedures would cost, I thought it was really sweet of him to agree to what ever I wanted to do for my self esteem. I am so grateful for a supportive family, much of our battle is won or lost there I think.

I'm a guy 36 years old. Had AA all the time from 2 yrs old to 20 years old. In retrospect, my friends were few and we were somewhat misfits. I played varsity football, was always bigger than my classmates. Only one time in Jr.high did an upperclassman openly make fun of me. Imagine the reputation an 8th grade guy can get when he beats a senior up in front of the whole school. Didn't make any friends, but nobody had the courage to make fun of me at least not within ear-shot.

I do remember every new school year being sent up to the school nurse to be checked out for mange! This happend from 2nd through 6th grade. Fortunately I can't really remember that bothering me much, I knew what the problem was and that was that.

During Basic training in the Army when I was 20, it hit me good, had some Quartizone shots and it was over.... Until this past year. Here I am, got thinning hair already, and big patches on the back of my head falling out (not male pattern baldness). Even better than that, last summer it seems I woke up one day and I had no chest hair (I was a Really hairy chested guy)! That was after I noticed that after the last time I burned the hair off my knuckels that it did'nt grow back, and upon further inspection noticed that my arms were now smooth. No big deal, my legs are getting patchy now, but I think they always were. Now, I have noticed since Christmas that my beard is falling out in big patches! All this stuff does'nt really bother me much, I just wish I could choose which hair to come out. I would have got rid of the hair on my ass a long time ago!

Hang in there, I look back on my school days and think to myself, that I was indeed blessed not to have something else wrong, plenty of kids got it much worse (AA or other real handicap). I do also like to look back at those guys that did not befriend me and made fun because I was different and look at what they have done with themselves. I am rather proud to say that I have been married to the same beautiful woman for 15 years, have three beautiful kids, and am a successful engineer for a major manufacturing company. A lot of those people who thought they were hot stuff, never succeeded by any standards (my turn to call them losers). Life could deal a worse hand. Adversity is just opportunity, and opportunity does not come to you you have to go to it and make it work for you (or words to that effect).

Self esteem comes from within. Nobody bestows it on you. Feel good about yourself and who and what you are as a person. Others will see the light that glows from within and accept you for whom you are. Ignore those that don't. They have little worth.

We in life, get used to seeing people with hair. Things change. If you paint a house a different color, the house is still a house isn't it? So it is the same with hair. You can change the color or not have any at all and you are still you, wonderful you.

SELF-IMAGE

Now there are two women - the bald one I wake up to and go to bed with, and the red-head with drawn on eyebrows that goes out into the world. Neither of them resembles the first woman, the one I used to look like. The one my husband married; the one who had three children. And even though the red-head is passably attractive, the baldy is a striking contrast.

So it's not just hair. It's self-image. It takes a lot of energy to be these two people every day, especially when I'd rather be neither of them.

Reply:

I felt your pain in that post. God, it hurts, I know.

You would not be the same person your husband married or the one who bore three children even if you did have hair now. Just like people with hair, you have matured and grown emotionally and mentally. Now you have the opportunity (whether you like it or not) and necessity (for sanity) to delve deeper into yourself, beyond the superficiality of outward appearance. Yes, this is the supreme test of self-love and self-esteem.

My favorite sermon was the one about loving your neighbor as you love yourself. The verse should be reversed: IF you love yourself, that neighbor will be no problem. I personally have found that I tend toward self-pity (ie, seeing a clown in the mirror) when I'm having problems in other areas of my life. So I tell myself to quit looking! Sometimes it's as simple as that.

This darn disease is a real test and sometimes I just wish I could be vain again.

When my neighbor with rheumatoid arthritis and I compared our disabilities, she said she would gladly take mine instead of hers. She is facing the possibility of being in a wheelchair in 5-10 years. So she lives each day exuberantly, training for and racing in 100-mile horse endurance rides. She has to tie the reins to her hand because her hand is so deformed she cannot grip anything smaller than 3"! So I, too, shall go on full-speed ahead.

I shall end my little sermonette. I hope you feel my concern and empathy for you. No, it's not just hair, it's a genuine challenge each day of our lives. I know you're up to it, so hang in there!

I would like to tell you my story, the husband of an AU wife. I love my wife for who she is. When she came down with AU, nothing changed for me. It took a year or less for her to lose all her hair. In that time the only thing I suffered was for her suffering. Not once to this day has the fact of her having no hair bothered me. I do not want to bore you with a long letter so I will make it short.

We have been married for 37 years as of 3/25/98. She has been my joy, my companion, my strength. When I see her I do not see her baldness I simply see her, the woman I have loved for all these years. So if a love is strong and true, baldness or any physical change that is not wanted makes no difference. In the early stages of AU my wife was very sensitive to her appearance and did not want me to see her without the wigs she began to wear. One day she walked in, took off the wig and there she stood in all her bald glory. I have never loved her more than at that moment. So as you can see, love conquers all. Now some of you after reading this will probably think what a crock, but crock it's not. There is no way that I have of knowing what she is experiencing and going through all I can do is be there for her.

SEX

I'm 5'0" too!! But besides that, I have to say that I fall into the "beauty trap". Although I walk around my house without my wig on and can feel o.k., when my husband wants to get intimate (we are newly weds), I just don't feel "sexy". My face looks the same, my body looks the same (although slightly flabby since I seem to have no drive to work out since my AA), but without my hair, I just don't feel like I'm attractive. I try to keep the wig on and then I feel better about myself, but the darn thing moves around and instead of enjoying myself, I'm worried about it falling off. He doesn't seem to mind, but I know its not the same for him either. I think that comes from me being frigid about the whole thing.

He tells me I'm still beautiful (but then again what's he gonna say??), but the thing that's really hard for me is that my whole life I was "cute". I was always able to get my way and get by on my looks and now I feel like besides my hair, there is part of me missing. The part that had self-confidence and strength. I use to walk with my head held high (since I'm short, I always wanted to stand as tall as possible), now I find myself walking around looking at the ground and never trying to get what I really want. It seems I settle for things I never would have before. I'm sure others feel the same way and was wondering if you ever get "it" back even if your hair doesn't???

Reply:

Yes, you get *it* back! And listen to your husband, he probably truly doesn't care. My husband says he's just thankful to "get some". ;-) Really though, they don't see what we see or worry abt what we worry abt. I have AU, so I feel like a child with stretch marks, right out of the shower I feel like an alien from the movie Coccoon and yes, all this did bother me and kept me up late enough to make sure my husband was sound asleep when I went to bed. Somehow Scott knew all this and was very kind and was just there to let me cry and rub my back, no sexual advances. When your man loves you it does eventually sink in. Think about this, if it happened to him would you turn away? I bet not.

You can dress as sexy as you like, wear any wig you want, when it gets down to it, take the darn thing off along with everything else. Do you really think he'll notice, at that point you're the only naked lady in the room, I don't think he'll turn you away. Remember, being "cute" is very fleeting, maybe too fleeting when you lose your hair, but eventually you grow older, lose your body to childbearing, your teeth to too many chocolate Easter bunnies, whatever. Our husbands still love us through all these things and will through the hair loss, also.

It just takes time. Believe me I don't like having AU, if my derm called and said, ok, this is it, for $10,000 you can buy a pill to grow your hair, I would be in his office the next day with the money. But, from this I've learned that my husband really, really loves ME and what better prelude to sex is there. It has never been as much fun, not even when we were newlyweds.

STARES

I really believe that how you feel about yourself has a LOT to do with how natural you look. In the real world, whether or not people can tell you are wearing a wig pretty much follows the normal statistical pattens of the bell curve and the 80/20 rule. It is obviously the interaction between (a) how realistic the wig looks, and (b) how astute the observer is. Under normal conditions, I would bet that 80% of the wigs out there will not be noticed by 80% of ordinary people. But the corollary is that 20% of the wigs people wear WILL be noticed by 80% of the people, and, conversely, 20% of the people will be able to spot 80% of the wigs.

Face it, a professional wigmaker is likely going to be able to spot close on 99% of all wigs. By the same token, there are some of us guys who are so dense, unobservant and self-absorbed that we will miss 99% of all wigs. (I know of one reputed case where a wig wearer has been sleeping with a guy for months, and thinks that he still doesn't know!) But given the rest of the good 'ol bell curve, most wigs will generally pass undetected most of the time. I am willing to bet that the large majority of people on this list, who are obviously extremely sensitized to alopecia, wigs, etc., will be able to spot another wig-wearer at 50 feet. But we are very much the exception.

I saw something yesterday that really gave me pause for thought. It was a relatively windy day, and coming down the street toward me was a very elegant woman. While I would not normally have given her a second glance, she was, however, making a *major* production about protecting her hair. She was bent over almost double into the wind, holding her hair with both hands, looking like a scared rabbit, and just about shouting "WIG ALERT! WIG ALERT! LOOK AT MY WIG!!". Now, this is probably an extreme case, but had she just handled it differently, it would have been an entirely different matter. She could have glued it on, clipped it on, put a scarf over it, worn a hood, worn an elastic band under it -- even just worn it snugly and held her head high. In reality, the wig she was wearing was quite good, and would easily have passed. But because she wasn't feeling secure about it, she was just crying out to be noticed.

Johanna, you wrote " I fix myself up very carefully every morning. I wear a very natural-looking wig and paint my eybrows with great care... I use false eylashes too. Considering all the trouble I go to to hide the fact that I have alopecia, I really should be able to relax and not worry about strangers being on to my secret."

Absolutely! As a matter of fact, I am quite sure that you are getting things completely backward! Despite all their protestations to the contrary (and they *will* always protest heartily), MOST guys appreciate a fair amount of makeup and styling in women. Even those men who swear up and down that they really want "the all-natural girl next door", if you ask them to choose between a woman with no makeup at all, and another with expertly applied (but a not insubstantial amount of) makeup, will virtually ALWAYS choose the latter. The same thing about hair. While many guys are turned off by so-called 'big hair', you can bet that given the choice between long, silky, Revlon-ad-esque hair and a Susan Powter buzz-cut, most men will choose the former. This is neither good nor bad, nor does it mean that they are evil people, it's just a fact. (Rather like asking a woman whether, all other things being equal, she would like her guy to have a nice, tight bottom, or a big flabby one.) What I bet you are seeing is a lot of highly complimentary looks that you are interpreting as suspicion. From the way you describe yourself, you can bet that *my* head would be turned in admiration!

So, my bottom line on this one is that you should just assume that (a) the vast majority of people have no idea that you're wearing a wig, (b) that the vast majority of men are looking at you with admiration if not lust (probably mentally undressing you :-), and that (c) there will always be a tiny percentage of people who will figure out the wig, but it doesn't matter because they are either professionals or fellow travelers, and thus on your side rather than against you. Given all that, make yourself up, fix your wig, and go out with your head held high, knowing that you are knocking the socks off all those sexy guys out there who really just want to get you into bed! [grin]

(Talking about being self conscious of going public bald rather than with a wig.) I remember, I remember, I remember those days........ What I realize now is I was my worst critic. I felt like everyone stared at me, when in fact most glanced,(it's human nature) Yeah and some stared (I figure those people couldn't help it, they were the kids that there parents didn't teach that it's impolite to stare!) I've already taught my children the many differences in people. One day when we were out, my children and I noticed a young man with an artifical arm. Because this is not something they had seen before they wondered why he had it, how it worked....So over we went to talk to him, I introduced myself and the children, and stated that I am trying to teach to them the difference in some people. As he could see I had no hair and I told him a little about Alopeica. I then explained to the kids that sometimes, through and accident, birth defect or disease that some people could lose and arm or leg, and that a arm such as his allows him to still do things. I asked him if he would help me by explaining how his artifical arm worked. He was more than happy he even shook hands with the kids with his articifical hand. In ending our conversation I thanked him, and he had tears in his eyes and thanked me for takeing the time to teach my children about differences, and for bringing his attention to Alopecia for he had never heard of it. Again, sometime long after, we passed someone with an artifical limb. My children never looked back, but stated Hey, Mom he had a arm just like John. Ignorance is our worst enemy. Sometimes, I feel AA/AU has been a blessing to me...it's taught me alot about myself and others. It's proved to me the unconditional love my husband and friends have for me. My husband and I dated for 4 years and married one year after I was completely bald. I did not wear a wig on my wedding day. However, I designed my own veil. The photographer won a Blue ribbon award with one of our wedding photo's and it was enlarged and a main display at his studio. As well, he used this photo in our city's newspaper for advertisement. Had I wore a wig....I would have looked like everyone else!

My most recent endeavors was going to HI and swimming bald at the resort..I thought Awh Hell, I'm never going to see these people again. Just recently I went to a coaches clinic (I'm coaching my son's T-ball team) There were approximately 125 men and 3 women. I was the only bald woman. I had a great time & learned alot. Marie, the only time I wear my wig is for a very formal, dressy occasions, I mostly wear hats & scarfs but only when my baseball cap doesn't quite cut it. It feels wonderful to not have the pressure I used to put on myself. And by all means I'm not saying AA/AU suffers need to be able to go without wearing a wig. I've had 3 of them. For a long time I found them so limiting. I finally found one that is uncomparable to any I've worked with personally or professionally. Expensive! But my big hang up is if I'm going to wear it, it has to look dam good. This one does. I'm not sure if people know this but most insurance companies cover some of the cost of a "Cranial Prosthesis", if not file a complaint! Sorry, I rambled on, it's wonderful to talk to others experiencing the same challenge. We not so alone after all...............Take Care, Constance

P.S. One time I this person kept staring at me....So I lifted my hat so she could get a better look....all of sudden she didn't want to look no more.. Hmmmm!

WIGS

CARE OF WIGS

When I wore my wig, I used bobby-pins, mostly to secure it. I don't know what length yours is, mine was shoulder length. The longer the length of the wig, the easier it is to hide the pins. I had my wig styled by a professional, who sold me the wig, and is also a licensed beautician. All adjustments & cuts were free. A good word of advice with new wigs, is when having them styled for the first time, keep a lot of the length. That way, you can give yourself a week or two to adjust to your new look, play with the wig, and if you want it shorter, you can go back & have it gradually cut shorter. Do the styling in small, gradual steps, because once the length is taken off-it's gone for good! I kept going in every week for cut & style adjustments, when I first got the wig (at least 5 of them!) until I was happy with the look. Also, Human hair wigs tend to be extremely "thick" with hair. You'll probably want to have it thinned some, but do this even more gradually than the styling! After you thin the hair, the wig continues to shed more hair for at least a week (this is normal), so even if it looks a bit thick at first, wait & see how much it sheds when you get home, before thinning it more. I styled mine with bangs in front, to help hide some of the clips. I would put my own hair up in a flat bun underneath the wig, securing it with bobby pins, & if you have some of your own hair in the front, or on the sides, you can even keep some of that loose to blend in with the wig hair.(if the color of the hair is the same) & to help hide the pins. Next I would brush the wig out before putting it on. Then I would place 3 bobbypins underneath the bang line, 2 pins on the sides of the face (blending in my own hair to help hide them), 1 pin underneath/behind each ear, and 3 in the back, at the base of the wig. For the top of the hair, I wore a side part & fluffed up the top a bit to help hide pins. Also, a little bit of curl in the wig will camoflage also. If the wig is human hair, you can use curling irons, rollers(Steam ones are good) or blow dryers on it. I have used steam rollers on a synthetic wig with some results, but be careful & test a small area underneath first, because synthetic wigs can melt! My wig was usually quite secure with the bobby pins, but my hairdresser also suggested that tiny hair combs could be sewn into the cap of the wig for added security, if need be. (I didn't need this) Be careful when brushing the wig, once it's on your head-this can knock some bobbypins out of place or move wig position. I washed my wig about once every 2-3 weeks, depending on how much I perspired, smoke, etc. I won't lie, the washing of my wig was a big, tedious production! I'd fill my kitchen sink up with lukewarm water, and some Pantene shampoo, then "dip" the wig up & down out of the water. Next I'd fill the sink with water and conditioner (Pantene) repeat the steps, but let it sit in there for 10 minutes. Human wigs need lots of conditioner. Then I'd rinse in water, blot in a towel, spray on a "leave in" conditioner to help detangle, Comb through the wig on my lap, holding the root of the hair while brushing so as not to pull it out of the cap. I placed it on a wig stand, and sat there & blow dried it for about an hour. Then I put the wig on my head & styled it.

INSURANCE

Although entitlements differ slightly from [Canadian] province to province, I am unaware of any provincial system that recognizes the cost of wigs for alopecians, chemo-therapy patients, etc. Supplemental group insurance is usually available through your place of employment, labour union, etc. for a modest monthly fee that is intended to cover the cost of prescription drugs, orthotic aids, etc., and sometimes for hairpieces. Unfortunately, there are inevitably limitations, restrictions, and deductables that vary depending on the type of policy underwritten.

Alternatively, you could purchase private insurance from some outfit like Blue Cross, but the costs are pretty steep, and it is unlikely to make financial sense if you only expect to purchase the occassional hairpiece.

Reminds me of the insurance executive that one of my friends went to. Her daughter has au and they would not pay for a hairpiece. Mom brought in pictures and when the stupid executive said wigs were cosmetic she pulled out the picture of her daughter and told him she would like him to hire her daughter to work as his receptionist. She got a check for whatever amount they needed and it was put in the record that her claims were to be paid. Also my own md story is still so painful. When the pediatrician saw the patch on my son's head at age 10 he looked at me and said "what can you expect, look who he has for mother" That was really the pits. MD's need more sensitivity training.

Today I had my husband shave my head. The glistening white hairs look deceptively full. Great - just when I need a diagnosis of AU to fight the insurance company! It felt nice to be able to exert some control over how my head looked after so many years of my head and wigs dictating what styles I could have. My seven year old and three year old say it looks okay, but I had probably better wear a wig outside of the house if I don't want my feelings hurt.

MISCELLANEOUS

I've been getting a lot of really nice messages from people and I just wanted to let you know that I appreciate them. I'm 20 years old and have been losing my hair since I was 17. My family doctor told me it was alopecia areata, but that's all she could tell me. I guess it's not very well-known! So I went to one dermatologist who told me it was stress and to do yoga. I don't DO yoga. He's the only dermatologist in my province, though, so for a year I tried bending myself into weird shapes ("I am a lotus blossom..."). Then I got an appointment with another dermatologist, in another province, 6 hours and a boat ride away. He gave me cortisone shots in the affected areas. One word: PAIN!!! That was this past summer. The hair hasn't really started growing back or anything. I mean, it grows back, but on its own, and more of it falls out. Anyways, up 'til now it's always been hidden by the rest of my hair and I'm glad. It's not great to have to have the same hairstyle all the time. It was hard at my prom: I had to leave my hair down, and I have the curly kind that gets all messed up really quickly so I wasn't exactly Ms. Beautiful by the end of the night... And of course being at a small university where the mentality is "Be like me!" isn't great either. I've only told my closest friends about my AA. Once, a boyfriend "discovered" one of the bald spots. Boy, he was grossed out! I lied to him about it (I've lied a few times, to hairdressers, etc., just because I don't feel like it's any of their business. I mean, would you go up to a fat person and ask "Hey, have you been eating too many donuts?" Or to a person in a wheelchair "So, what was it, a car accident?". These are not questions you ask a stranger.). I think I told him something about having had an operation...I don't really remember. Anyways, I haven't been able to even THINK of having a boyfriend since then-- I'm always thinking "Oh, if he finds a spot like that, he'll think I'm some kind of freak". Even though I know I'm not, and all the stuff Mom told me was true, that if a person cares about you, they shouldn't care about your looks. I realize all this is trivial but I'm 20 years old and feel like I've been crippled somehow! Half the time I think "Well, if it ever shows I'll just shave my head (I have a cousin with Alopecia Totalis and she just goes around with a bandanna on). The other half I obsess about how much a good wig would cost and if anyone would notice that it was a wig. I saw in People magazine that Princess Caroline of Monaco has alopecia and I found it really cool that she doesn't wear a wig. But then I saw her on TV (yeah, all we university students do is watch TV and read People!) and she wouldn't say what it was. Anyways, I've been rambling and I'm sure you all must be bored to tears by now, but thanks for your kind messages and sorry this was so long!

Here is my science fiction story after reading 3 magazines called X-factor. In these magazines I read about Ufo's and the crash in New Mexico in 1947. There were found dead aliens who were bald on their head. I had also seen the pictures of these aliens and the TV documentaire about the Roswell incident. I don't know if the pictures or story are true. My theory why there are people with AA, AT and AU is the following: Aliens from the planet Dermatology visit our planet frequently. They look almost like us, except the hair. They are peaceful and will not harm us. These Dermatologists want to be like us, maybe better than us. Dermatologists have a very high IQ and and an advanced science, something which prompts a bright idea. Suddenly, they discover how they can get hair. They find out that we must have stuff (which let hair grow) in our body. That is the stuff they are missing in their own bodies. How can he get that stuff? It's very simple. They follow us with their UfO's sneaking round the whole world. If they make their choice they pick out one of us and suck from our scalp with a pipet called "biopsy". They inject themselves with this recovered stuff and, you quessed it, it makes us lose more hair while they..... get money (unfortunately also no hair for them). Of course the story has a happy ending. The IQ of the aliens is so high that recognize that money is more important than hair. So they finally start injecting other chemicals (corticosteroids) back on us so that we return to them repetedly in order for they to have more money. The point is that many people on planet Earth have not recognized that aliens living among us and foreign to the way we feel about being hairless are making a lot of money at our expense.

Remember Billy Crystal and whoever it was on Saturday Night Live?

De odder nite, I was usink dis zapper ting...boy did that hoit!! I don' tink I helt it properly, cuz my wife and kids were gone, so there was nobody dere to help me.

It kinda boined my head. At foist it felt really funny, kinda like a little tingling, but den I slipped and moved the handl, and da sparks started jumping around...and oooiiii, it boined like no tomorrow! MAN did dat hoit!!!

Yeah, vell you tink dat's bad, this nice lady on the Alopecia board tolt me about zom ztuff called SADBE. SHE zays you put it on yer head and it starts ta sting. So I tried it...man was dat painful!! It made my head all red like a tomato, ant it started to swell and sting...man did dat hoit! An den da nex day, I got da most terrible case of Acne. I taut I was gonna die! I got a little hair from it. I tink I'm gonna try it again tomorra.

Yea, vell you tink dat hoits, I vent to dis doctor da udder day and he pulled out dis needle. Den he started jamming it inta my head and eyebrows...I taut I'd knew pain until den, but man I was wrong. He just kept sticking it in and pulling it out and jamming it in again and pulling it out and sticking it in again...man did dat hoit!! But I got a little hair from it! Dey say I'm going to die a slow painful, oily deat from it too, but I tink I'm goink back tomorrow for more. OOooiiii dat hoit.

You are a red neck alopecian if... you don't put sunblock on the area where the ball cap doesn't cover and therefore have a red "cutout" separated by a band of non-red skin underlined with red skin. Been there done that, how did you know I've been out in the sun?

Dermatologists on Dermatologists

While searching the net I came across a site where derms e-mail each other about AA/.... Very interesting reading. You will want to spend some time there, I guarantee it, rxderm-archives/alopecia-areata.

These archives are dated 12/16/96 and are 38K. Be sure to specifically check out (scroll down to) items:

(5) Role of Trauma in AA. Dr. Searles writes that recent cases of AA he's treated have originated at the site of insect bites! He wants someone to join in a study, but it doesn't appear he gets any "bites" from the other doctors, no pun intended (NOT).

(13) Cases. Here a Dr. Jeff Marmelzat is looking for answers about his patient and her mother both contracting AA for the first time at the same time! He states the only commonality he could determine was that the two women had been on a trip where they were drinking well water. He wants to know about heavy metal toxins in the water. He gets a bunch of jerky retorts from the other doctors who obviously think he's got a bats in his belfry. They go so far as to turn his legitimate inquiry into a "Patricia Cornwell" who-dun-it mystery about who poisoned whom.

CASE HISTORIES AND TESTIMONIALS

I got the first patch when I was 20, engaged to be married, and in college. The doctor prescribed that nasty tar ointment that stained everything, put me on oral steroids for so long I ended up with a bleeding ulcer, and told me that I had a problem dealing with stress that was causing the alopecia. He just kept asking me, "What's REALLY bothering you?" The answer was of course, MY HAIR IS FALLING OUT! I got married wearing a wig. Then my hair grew back in, wonderful natural curls.

About five years later, another AA flare up. I was working at my first job here in Atlanta. Different dermatologist, so this time I got steroid injections in my head and was handed a pamphlet on stress management classes. I got horrible headaches and big indentations in my scalp at the injection sites. You know, someone should really let you know about those side effects, before you think your skull in caving in. The round patches just kept moving around my head in pairs. Whenever "it" moved off to a new site, I would get regrowth in the old site. "It" just kept moving around my head. And then I got pregnant with our first daughter. AA went into remission for my entire pregnancy and about six months postpartum.

And then it was back, just as suddenly as it had gone. I changed to new, shorter hairstyles so that I could hide the bare spots. Again, it just kept moving around. I took some more painful injections and stress mgt. pamphlets home. No effect. Then I got pregnant with our second daughter and experienced temporary remission again.

Note, I said temporary. This time when AA got going, it went into high gear. I changed dermatologists. The new doctor cut a small chunk of my scalp out to verify I actually had AA (gee, I do) and started me on aggresive anthralin treatments that caused actual blistering on my scalp so severe I couldn't go to work. He did, however, tell me that stress had nothing to do with my AA, but my genetic make-up certainly did. A fairly humorous call to my mother and father to complain about the sh-- genes which gave me asthma, exzema, and now this!

I thought I was doing a pretty good job of camoflauging my AA until a fellow co-worker took me aside. "Are you okay?", he asked. "We're all concerned". The first of many people to assume I was being treated for cancer. I started wearing a hairpiece again.

And then I was pregnant with our third child, a boy. My AA didn't go into remission this time; it literally just ate my hair off my head. I told the dermatologist I couldn't stand being pregnant, having a blistering head, AND wearing a wig! So, he changed to PUVA treatments twice a week. I got some regrowth, but AA just moved onto other places on my head. I delivered our third child with my husband and my naked head (no wig). I got it back on my head for visitors a couple of hours later.

I thought my regrowth was looking pretty good, so my mom bought me a beautiful hat. I went with her to a doctor appointment, to a long-time mutual friend. In the middle of her reception area, Dr. Eva walked over to me, said "What's with the hat?", and proceeded to lift it off my head. She audibly gasped and very quickly replaced it. Looking good obviously is relative- I still had some bald spots and the regrowth hairs were white on the ends with pigment close to my scalp. I started wearing my wig again.

In fact, mom and I went out and purchased a new wig. The lady asked if I would like to look at human hair pieces. I started crying. I told a perfect stranger that I wasn't ready to admit that this was potentially a permanent problem.

Jared, our youngest child is now thirteen months old. My eyebrows and eyelashes have left (except for about four upper lashes on one eye - my husband has suggested that we donate them to AA research), but I have white regrowth on about 50% of my head. All the hairs that did have pigment fell out again. I changed doctors and this one tried cortizone injections in my eyebrows and front hairline. Gee, pain, headaches, and the darn pigmented hairs all fell out again! Who would have guessed?

So, what's having AA feel like? I'm sure you have your stories like mine. Like the very nice man in parking lot who witnessed to me for fifteen minutes about being a cancer survivor; keeping my hair on top of the silver cabinet by the front door; accidentally leaving my hairpiece on the kitchen counter and having to spend 30 mintues with a young nephew explaining whose hair it was and why did Aunt Mary wear two heads, etc.; my seven year old looking at a preAA picture of me and saying "gosh, that was a pretty wig"; my three year old with me at a wig store saying "now this is the wig I'm going to wear when I'm grown up; feeling trapped inside your house, unable to work in the yard because my wig was too itchy and hot; not being quick enough to throw on my wig to meet my daughter's school bus on the first day of school; moving out of my baby's first birthday picture because I didn't want bald photos of me; being scared to death that my children might get this thing; and sitting sobbing in a chair a month ago-- because I sent off to my insurance company for wig reimbursement and when they sent back their denial (cosmetics, of course), the waves of sadness for having a disease that has no cure and the waves of guilt for feeling so sad about something so trivial came crashing over my head. Family, close friends, and some of the emails on this listserv keep telling me how lucky I am- so if I feel bad about being bald, is there something shallow and somehow very wrong with me?