Frequently Asked Questions about alopecia (part 3)

HOW ABOUT ATOPY (ALLERGIES)?

“I also have allergies, atopic dermatitis and seasonal bouts with asthma. I am allergic to so many drugs, sometimes I feel like I'm allergic to the entire practice of Western medicine.”

“My dermatologist (who I've been seeing for 2 years for eczema) refused to give me any blood tests, and insisted that there was no connection between the eczema and the AA; also that there was no connection between either of these and the stuffy nose that my GP treated with a cortisone spray. Well, since the treatment for all of the above was cortisone in various forms, it seemed to me that there must be a connection.”

Atopy is a hereditary predisposition to allergic disorders, e.g., hay fever, asthma, eczema. It is very commonly seen in the general population (approximately 15%). I am inclined to believe that air pollution has made for an increasing prevalence of these disorders over the last few decades. The final mechanism by which these disorders are expressed is an elevated serum factor called IgE (an antibody). Many of these antibodies are found in cells located in the skin and mucous membranes. That is why symptoms are often referred to the nose, throat, lungs, eyes, etc..Approximately 40% of patients with alopecia areata have atopic features. Knowledge regarding this relationship may prove of some therapeutic use. I have seen eczema to the point of bleeding in the feet of children that had otherwise offered no spontaneous complaints. They had come to accept the painful and chronic condition as natural. The parents had no clue as to what was happening or that the peeling of skin between their child's toes needed treatment.

In the case of my daughter, who suffers from AA, a generalized skin eruption was misdiagnosed by a Dermatologist. Knowing that she is prone to allergic disorders, I made a diagnosis of atopic or contact dermatitis. Her dermatitis subsided once I changed her soap to a non-allergenic one (Avenobar). Ever since, I have noticed similar problems in many of my patients. Atopic dermatitis is characterized by a dry, itchy skin. Areas of skin folds (e.g., wrist, elbow, behind the knee) are usually affected. Treatment is based on avoidance of skin irritants. Again, the most common culprit in my experience has been soap. Use a non-allergenic one for your bath and a mild one as a detergent for your clothes (avoid anything having enzymes). I have also noticed some benefit by changing the air filters often, cleaning the bed linen at least once per week, and using a hypoallergenic pillow case. If your child sleeps with a sibling then they should also use a hypoallergenic pillow case. Aggravating factors such as woolen clothes and heat (e.g., hot water) should also be avoided. Washing dishes should be performed while wearing gloves. Plastic ones may be used if sensitive to rubber, and ideally they should a have separate washable cotton lining. Use lubricants liberally- actually some people even use aqueous creams as a soap substitute. Moderate to severe forms of dermatitis can benefit from topical short term corticosteroid treatment while antihistamines may relieve the itching. The corticosteroids should be prescribed by somebody competent, taking into account the age of the patient and the area of skin involvement. They are not safe for chronic usage because of side effects. Cases that do not respond to treatment can benefit from skin patch testing to determine the allergen.

Environmental control should start at home. My wife can always tell when the air filter of the furnace needs changing because of her allergies. Fiberglass filters are cheap but highly inefficient. They filter only about 4% of all particles. A better choice is offered by electrostatic filters with a 95% filtration rate. They are more expensive and also need frequent cleaning. Our central vacuum cleaner has paid its weight in gold. Portable units have an exhaust that leak dirt into the air. It made inacessible for 3 or 4 hours any room that had been so cleaned... and yes, I had to do all of the vacuuming before the central unit was installed. Now, if somebody were to invent a hypoallergenic breed of dog, it would alleviate my having to bathe the dog every week.

Sensitivity tests have shown that my whole family (except me) are allergic to everything under the sun. Dust mites are apparently the major culprit. They are found in large quantities within the stuffings of your mattress, box springs, and pillows. Right now everything at home is encased in plastic. Some stores may carry plastic coverings for this purpose, if not, you may obtain further information on environmental control products from:

Allergy Clean Environments(800)882-4110
Allergy Control Products(800)442-DUST
Allergy Supply Company(800)323-7644
National Allergy Supply, Inc.(800)522-1448

Should your next pillow be filled with polyester fibers or feathers?

That's a question you may ask if you have allergies or asthma, because dust mites get into pillows. And breathing in dust with dead mite parts can worsen allergic or asthmatic conditions.

In a recent study published by New Zealand researchers in the British Medical Journal nine polyester pillows were pitted against against nine feather ones and the number of dust mites quantitate. The result, feathers beat polyester fiber. After Six months, the polyester pillows contained about eight times more dust mite allergen than the feather pillows. "This study indicates that polyester fiber pillows are better at harboring house dust mites than feather pillows," says Keith I. Marton, M.D., an associate editor of Journal Watch, a publication that reviews and comments on new medical studies. Dr. Marton points out that a previous study suggested that feather pillows could worsen symptoms. But,given this new information, " It may not be wise to discourage the use of feather pillows for allergic or asthmatic subjects."

Insects, especially coakroaches, may be a problem. Cats reduce their numbers but then you may develop an allergy to cat dander. People allergic to coakroaches are also allergic to chocolate... guess why? There are coakroach particles in chocolate. The insecticide used by some commercial companies may be markedly irritating some people. I have found standard hygenic measures work best to control the coakroach problem.

A major difference in my home came when I sealed all of the cracks between the basement and first floor of our house. I used a glue similar to the one used for linoleum but more of a paste. Areas of high humidity, e.g. basements, are prone to develop molds. If you can not seal the cracks maybe a dehumidifier can help.

The following are recommendations from a book by Lawlor, Fischer and Adelman called "Manual of Allergy and Immunology" (3rd edition, page 52, 1995).

The patient's bedroom is most important, since a significant portion of the day is spent there. Follow these suggestions:

  1. The bedroom should contain no stuffed chairs, rugs, or drapes. Linoleum or wood floors, wood or metal furniture, and washable cotton curtains or curtains made of plastic or Plexiglas are preferrable. Everything in the room should be washable.
  2. Avoid storing blankets, woolens, felt hats, or other dust catchers in bedroom closets. Keep the doors closed.
  3. If there is a furnace vent in the room, close it (if possible) or cover it with commercially available vent guards. (Exercise caution with inflammable materials brought into contact with heated metal).
  4. Doors and windows in the room must fit tightly. Close windows during major pollen seasons or during pollution alerts.
  5. Once or twice a week, clean the room with a damp dustcloth (the patient should avoid the room during and for 3-4 hr after cleaning).
  6. Use Dacron or foam pillows, and wash pillows and bedding every 1-2 weeks with water > 55 degrees C (130 degrees F). (In households with young children, carefully monitor water temperatures to avoid scalding burns.)
  7. Vacuum mattresses and springs and completely encase in plastic with a zip- per closing.
  8. Wash blankets; use fuzz-free cotton or Dacron sheets next to patient's body.
  9. Have only wooden, plastic, or nonallergic (not fuzzy) toys.
  10. Keep pets out of the bedroom.

In the rest of the house, follow these instructions:

  1. No smoking should be allowed.
  2. The allergic patient should not sit on overstuffed furniture or on rugs. Cotton or nylon rugs backed only with rubber are best.
  3. No pets should be kept indoors.
  4. Eliminate all house plants (dust and molds).
  5. Do not use room deodorizers, mothballs, or bug sprays (strong odors).
  6. Have regular furnace cleaning, and provide covers for furnace vents if needed.
  7. The allergic patient should not be in the house while the house is being cleaned.
  8. Keep humidifiers and air conditioners clean; replace or, if possible, wash filters monthly or more often during heavy use.
  9. Masks are helpful during periods of unavoidable allergen exposure.
  10. Try to maintain relative humidity between 35 and 50% and temperatures less than 22 degrees C (72 degrees F), especially in the basement.
  11. Consumer Reports is an excellent source for techniques to modify the environment.

The following is a list of organizations offering resource information and educational programs regarding allergies:

Allergy Foundation of Canada
Box 194
Saskatoon, Saskatchewan 57K 355
306-652-1608
American Academy of Allergy and Immunology
611 East Wells Street
Milwaukee, WI 53202
800-822-2762
American Academy of Pediatrics
141 Northwest Point Boulevard
Box 927
Elk Grove Village, IL 60007
312-569-2025
American Allergy Association
P.O. Box 7273
Menlo Park, CA 94025-7273
415-322-1663
American College of Allergy and Immunology
85 West Algonquin Road
Suite 550
Arlington Heights, IL 60005
800-842-7777
American Lung Association
1740 Broadway
New York, NY 10019
212-315-8700
Asthma and Allergy Foundation of America
1717 Massachusetts Ave NW
Suite 305
Washington, DC 20036
800-727-8462
Asthma Association of Canada
Box 192
Toronto Dominion Centre
Toronto, Ontario M5K 1H6
416-977-9684
Canadian Lung Association
75 Albert Street, Suite 908
Ottawa, Ontario K1P 5E7
Canadian Society of Allergy and Clinical Immunology
% Montreal General Hospital
1650 Cedar Avenue, Room 7135
Montreal, Quebec, H3G 1A4
National Asthma and Allergy Network/Mothers of Asthmatics
10875 Main Street
Suite 210
Fairfax, VA 22030
800-878-4403
National Asthma Education Program
NHLBI Information Center
Box 30105
Bethesda, Maryland 20824
301-251-1222
National Institute on Allergy and Infectious Diseases (NIAlD)
Building 31, Room 7A32
9000 Rockville Pike
Bethesda, MD 20892
301-496-5717

HOW SHOULD I ADDRESS MY CHILDREN REGARDING THEIR CONDITION?

“I think my parents did the best they could when I was small, but they were not so well informed and did not have a support system or real source of information to turn to. I remember mainly that they tried to teach me to ignore the teasing, and to understand that the other kids were afraid or ignorant. Frankly, however, I remember this only in the most general way. My childhood sometimes seems like a big fog to me because I have very few specific memories of growing up and of what it was like to lose my hair when I was in elementary school or junior high. I have to conclude that there was a lot of pain and that I've buried it all, but I'm not sure if that's good or bad. J.Lewis wrote about her daughter's tears-- I really can't remember if I cried very much, but I would imagine that it's better to let it out than to suppress such strong emotion. Personally, I know that I often have trouble expressing extreme emotion in areas of my life that have seemingly had nothing to do with my AA-- now I'm beginning to wonder if the way I handled AA when I was little has affected the way I handle things as an adult.”

“I was reading your letter, and you said "At what age do children start becoming concerned about being bald ?" My hair started falling out when I was 11 y.o. I started being concerned about it when I saw my mother being worried about it.”

“What I don't know is where parent's responsibility to their children and their responsibility to themselves begins and ends. I think my mother had a responsibility to me to love and support me, but (for whatever reasons) she wasn't able to do that. Does that mean she's off the hook because she meant well? Or perhaps she was unable to be supportive in order to protect herself. That's valid. In the meantime, I'm left hurt and lonely. I know that often parents don't know what to say to their aa children. In my opinion, its not so much what they say, its that they say anything! Again, I think parents end up not talking about it at all, or as in my case, acting like its the biggest family secret since gramma Betty married her sister's husband.... I would have liked some hugs and shared tears.....I guess I would say that I wish my mom had been honest. Truth is always better that attempts at protection, no matter how much it hurts. I wish she could have been honest with herself about what was happening, I wish she could have been honest with me. I wish she could have been honest with the world about her daughter. Her silence and perceived disregard left me feeling unloved and like there was something innately wrong with me.”

Many times you will be talking to your child about emotional concepts that they have not yet experienced. This type of expression can have an enormous impact on their lives. It is similar to expressing grief when they have yet to experience the death of somebody close to them. Under this circumstance it is likely that they will memorize a lot of the advice that you will provide to them. Do not be afraid, rather be prepared, calm, and positive.

I do not believe that one should jump the gun and offer a three or four year old unrequested information. When they are very young, they are really not interested in their changing hair. Kids are busy jumping, singing, dancing, etc.. Later on they reach a stage where they may notice things but are not old enough to express their emotions.

Young children have a wonderful imagination. Given some information they may extrapolate and fantasize to a harmful degree. It is not uncommon for children with chronic conditions to fantasize about death, disabilities, contagious conditions, etc.. Young children think in concrete terms, they tend to be egocentric (think of themselves as the center of the universe)- meaning there is distinct possibility they could distort reality and blame themselves for what is happening. They think things happen for punishment-my hair is falling out because I hit Johnny. Children believe that thoughts and feelings can cause actions.

If you know your child, he/she will let you know when the time comes. Your child is going to have to deal with this at his/her own pace. Both the experience of loosing hair and the physical changes accrued with aging can be traumatic and overwhelming. You are there as a resource, a sounding board, and an educated friend. Also realize that any guilt you may feel on your part is compounded in the child. "I can't believe Mom feels that this is her fault. Now I really feel sad because Mom is so depressed."

When the time does come, I would never withold information or lie- even if it is a white lie. Children need to know that they can trust you and rely on you for information and support. In my conversation, I would never use technical jargon. You need to make sure that all of their questions have been addressed using simple words. Also avoid terms like baldness- they have a bad connotation. Hair loss offers some hope in that it may be a temporary condition. Also use the word condition instead of illness or disease, again because of the negative connotation. I wouldn't also use the word disorder. Having been in New York city the difference between a disease and a disorder is, " Hey, I wanted fries with my boiger, disorder is not mine."

Make yourself receptive to anything they ask, not what you want them to ask. Never lead your child throughout the conversation or prompt them to ask those questions for which you already have an answer. Remember this is the time to answer his/her questions not yours. Understand exactly what they are asking- think twice before answering. Again, be receptive to talking, but don't cram information down their throats.

Listen! Sometimes this is all that the child needs or wants. Take the following story, from my experience, as an example:

My 6 year old daughter yesterday stormed into our house crying. I was not sure what had happened at school but obviously she was bothered. I sat down besides her, hugged her and kissed her. After a couple of minutes my small heroine and best friend stopped crying, seemed happier, gave me thanks, and rushed past the door to start playing with her sisters. I am still not sure what happened, but I will certainly find out at the appropriate moment. Sometimes children and adults need to fully experience and express their emotions. The best thing to do is sit with them and be patient. The worse thing you could do is tell them, "Don't cry, it is only hair, or, your hair will come back in 2 weeks". Such an attitude fosters denial. Furthermore, it destroys your image of a supportive and trustworthy role model. It would be easy for me to try and comfort you by telling you not to worry, feel sad, or get angry about something you can't control, but ...that's not how real life is. A miracle may make her hair grow back in 2 weeks, but if it doesn't, she will know you were lying. Do not rush to undo feelings, rather give it time. That is the best way to gain acceptance. Even grown ups who are more at peace with their alopecia occassionally experience frustration, being overwhelmed. It is normal to feel this way and vent your anger. Sometimes only you will know the right thing to say or not say. Sometimes humor is the right thing, sometimes empathy, sometimes only a hug or smile. I believe that if you accept the disease and come to peace with your own fears you will probably pick the right thing to say the majority of the time.

Always emphasize that losing one's hair does not alter who you are. The condition does not affect your intelligence, sports abilities, kindness, etc.. Teach them about people with other disabilities, how they have been able to overcome them, how they have not allowed them to limit their lives. Build their egos, reinforce those things they are good at. In special education we call this an "island of competence", finding something in life that makes you feel worthy and special. Sports are excellent as an island of competence. They keep you busy and build a healthy body. Maybe a bully will think twice before tackling one of our athletic kids.

Read you children stories about the experiences of others who have surmounted enormous physical limitations. Not only do they help us realize that there are many types of challenges for all to face in life, but it helps us to empathize with others. If anything it will takes their mind off themselves, even if briefly.

If you need to fill a lull in the conversation emphasize the POSITIVE aspects of the condition, like- you don't have to waste time fixing your hair (Humor). Be inventive, play a little bit around with stories. Maybe the German folklore story about Cinderella was translated errouneously into English. What Cinderella really lost was her wig. Prince Charming then looked all over the village for the bald woman who fitted the wig. All of the young girls in the village shaved their heads, but alas to no avail- the wig could only fit the one and only truly bald girl. Cinderella and the Prince then lived happily ever after.

We can all learn from kids and sharing such knowledge may provide an opportunity to reinforce our values. A company health newsletter quoted the below from "Really Important Stuff My Kids Have Taught Me" by Cynthia C. Lewis:

Another positive aspect to alopecia may be that if your child likes swimming, the hair situation may free them from some of the problems other people have to face. I know these things may sound foolish to some folks, but amaizingly a positive attitude from you (as a parent) may do more than anything else you can try. On the other hand, faced with a negative attitude children will hide their feelings from their parents in order not to disturb them. Trust me- there will be times when they will hate how they look or being different. One of our members once expressed her childhood feelings "..When I was a kid I had ABSOLUTELY ABSURD things run through my mind, like "if I had cancer at least I'd be accepted for being bald, because then I'd have an acceptable REASON for being that way." Children may come to hate themselves and be depressed, be there for them. Sometimes their reaction and emotions are easily suggested in their drawings. Look at their art work and see whether they are depicting happy or sad things, are they drawing themselves as bald or do they still have hair? Does he/she has a smile on his/her face in the drawing?

Ask him/her what they have heard. Do not be angry at other people's callousness, idiocy or ignorance (at least not in front of them). Invest a lot of patience and understanding when explaining other people's actions to the children.

Talk to siblings. They are usually silent sufferers. Again answer all of their doubts and specifically ask them if they have heard anything. Do not assume that all is well because you haven't heard of any concerns. Changes in behavior and deteriorating grades may mean that they are worried about the brother or sister. Tell the older children that there is a lot of research being done and about the different alternatives (wigs, stylizing hair, medications, etc.). It may not be now but maybe 5, 10 or 20 years down the road somebody will find a cure. Siblings may worry that they have caused it, or that it is contagious, or lethal. Remember that they may be teased as a sibling or may have to help defend their sibling. Explore all of these aspects.

On the other hand, you may have an "only" child. I think that "only children" take matters of the heart much more personally (internalize them as FACT) than do children with siblings. In larger families what you say or do is never automatically accepted as FACT by the children. Because....they could say to one another, "hey, she does that to me too; it's not us it's her!". Of course they are wrong. ;o) Throw away all the baggage (generations worth being passed down) and set a new table. Give her love and you will get back love!

I have told my own daughter that I have seen this condition only in very special people. The minute I hinted she was special because of her alopecia I saw a twinkle in her eyes. She stopped being sorry and now seemed almost grateful. She then went on to explain to several of her friends, and even my wife, that she had alopecia because she was intelligent. She also added - without prompting- that alopecia was the reason why Michael Jordan was a good athlete. For a kid who only recently turned 6 I am sure that she will do OK. If you want to pursue this type of avenue you can also add that people with alopecia areata are more evolved than the ape so they need less hair. Alternatively you may say that they are potentially all the more intelligent because their brains are enlarging at such a rate that they are pushing the hair out.

Join a support group (e.g. our list server, see other sources of support). Never let information outgrow you. Children can "outgrow" information, that is, they can learn it at one age, and then if they do not use the information, will forget it over time and have to relearn it. Write to our list server, get a pen pal, exchange photographs. Sometimes it is wonderful to know there are other children sharing the same difficulties and coping with them.

Some children tend to to act out-be silly/talkative when uncomfortable. This is their way of coping with the condition. A study on women with cancer showed that those people who are outgoing recovered more quickly than those who were inactive and introverted. Being silly or talkative is more healthy than being withdraw- even though it can be a bit more annoying!

School can be challenging at times both academically as well as socially but there is no reason to stay home from school due to teasing. Some children rarely tell their parents when someone botheres them. They usually take care of it (verbally telling someone off, explaining what was wrong with them, or just walking away from the situation). They may also do a lot of "sweeping it under the rug". It is not until they are adults that they deal with all of those "under the rug" feelings and realize that they aren't any better or any worse than the person sitting next to them. Some may do a lot of stupid things in High School and College (choosing the wrong type of guys to date) due to lack of self esteem but when everything finally "clicks" they realize that necessity of dealing with people, their stares and questions. They realize that there is no need to feel like an outcast because of missing hair hair. Teaching your child to deal with cruel children's comments and stares will be hard for him as a child, but will only benifit him in the long run. Encourage him to talk about what kids say and do to him. Teach them how to deal with curious children and people. I always say that the unknown is what makes people behave the way they do. There are many different defense mechanisms (e.g., altruism, suppression, sublimation, humor, etc.) that can be used for different situations. Teach them (directly or indirectly) to learn to pick and chose one of them depending on the situation.--See Coping Mechanisms in our FAQs.

In a certain way your child's condition will bring both of you closer together. Enjoy and relish this relationship. I think that a lot of the strength and courage that you need will be derived from your child- I know that I have already learned a lot from my own daughter. Hopefully, as in the case of some of the members of our list server, alopecia areata will make her a stronger and more confident person. Attitude is everything. When some of us refuse to be victims then our children are raised the same way.

Remind your child how much you love them. Draw a 'smiley face" with an x on its head (supposedly a kiss) on his/her lunch bag. He/she will be happy to discover that Mr. Smiley face is actually a baldie and since you are always kissing his/her head, it seems natural to add a kiss to the representation. Hey, it may even become his/her logo!

Some further advice for parents by parents:

“What I try to impart to her is the acceptance of her feelings of hurt or anger. Since she has been dealing with this for fourteen years her need to express extreme levels of emotion has pretty much abated. All she seems to be looking for from me is the understanding that this disease is frustrating and disappointing. Losing an eyebrow is very difficult but she has done it probably 8 times. It was hard this time because of her age and having to learn to use an eyebrow pencil. Jennifer came home from school a few days after beginning to wear the eyebrow makeup pleased by all the positive attention she has gotten from her friends as they try to find better ways for her to style her new eyebrows and how to keep them on without smearing them in class. She has just gotten used to putting them on according to the instructions from her friends and her eyebrows are growing back in again. I don't think we are avoiding or denying. I think we have dealt with our emotions to the point that the alopecia is a frustrating, dissappointing, and irritating condition that we recognize we can handle.”

“I believe that as children develop their needs change. Although she would like to get her positive attention from her peers in a different way, she really needs that positive attention now and then. I like to remind her of the old days when she could curl up in my lap and I let her know that Mom is still there ready if needed. She really seems to appreciate knowing that I'm there if she needs me. But she is really struggling right now to not need me. I think we are at the best place we know how to be given my personality and stress levels and her personality and developmental stage.”

Many parents can feel their adrenaline building in anticipation to the first loud, rude comment from a stranger. By now you will already have noticed their stares or whispers when you are out in public. Will it hurt them? How should you, as a parent, react? Can you be patient and informative, are you going to ignore them, or are you going to chop them to pieces? You know that you should remain calm, patient and informative, but it is soooo difficult. There is a natural reaction to defend your young ones, roar back at the aggresor.... but remember, even if you are angry, an open confrontation can bring more pressure on your loved one. It embarrasses them publicly and worst of all makes them more self-conscious. It only promotes the idea that they are different. Kids learn how to handle their condition through the example provided by their parents.If they take this attitude from their role model, it will make them even more nervous and apprehensive all through their lives. Certainly the end result is not defending your loved one. Fighting back in a destructive fashion viciously fuels ignorance and fear. Instead of yelling, educate and provide information. Education is and will be a never ending process. Use your coping skills. Explain to your daughter/son that these people are the ones who need your help and understanding for they have none of their own. This is a good time also to reinforce good family dynamics. Remind them about good values. It is not money, position or looks that are truly important. Similarly, rude comments may come from other kids. They can be so cruel! At a certain age some kids feel the need to be mean to anyone who isn't like them. This is certainly a small consolation to kids who are the object of teasing, but tell your kid to be patient. You know that truism; "Ignore them and they will stop?" Well, it isn't easy by any means, but it is probably the most succesful method to keep teasing at bay. If rude kids are ignored, they usually give up. Mean kids want to get a rise out of your reactions. The experience of some teachers is that kids have an uncanny way of knowing when we are uncomfortable about something and then going for the jugular. When they find you are o.k. about it, they get bored. Furthermore, ignoring the mean remarks always make you come out of the situation looking pretty dignified. After a while they may stop noticing that you are any different at all. Tell your kid to think of himself as a gumball machine himself as a gumball machine. When other kids tease, they were putting a penny into him. When he screames or reponds angrily at them, he is giving them a gumball. If he stops giving them gumballs, they would finally get tired and go put pennies into someone else's gumball machine. Let us keep in mind that some of the people that voice rude remarks may have more in common with other alopeciacs than what we give them credit for....they and you have had too many shots to the head :-}. There is a saying in Africa, "Hou die blinkkant bo!" which when translated means, "Keep the shiny side above." It makes reference to the fact that you should always show the best of yourself to others.

People usually tease because they are ignorant and don't understand. In some cases these kids may be the end result of a rough family life. When people display their cowardise by being outwardly cruel to others they are presenting a weak side of themselves. Pity them, but don't join them in their anger. Some of these kids may later become your friends. As Abraham Lincoln said, "Am I not destroying my enemies when I make friends out of them". As parents take advantage of this opportunity to instill in your kids a sense of pride. Take pride in any difference but also appreciate the differences in other people.

Many of our members can honestly say that before they developed AA, they weren't into helping any cause. After developing their alopecia they have been transformed in every sense of the word, from being selfish to giving everything they've got. They used to have the compassion, but not the desire. Now they step up to the plate in any circumstance and feel great about it. Now their moto is ... "If I'm not giving, I'm not living". So I guess you could say, that when we are educating others about the importance of seeing people for what's on the inside, then we have to have those selfish people who focus on their image as being everything, to pose them as examples. Everyone has their place. We are special and I think we have proven that time and time again.

For very young children it is very difficult to try and explain this condition and pronounce the name to boot!! A mother's explanation to her daughter can probably help- "Tell them you have a hair allergy, you (the classmates) can't catch it, the doctor's can't fix it (right now) and I'm going to learn to live with it!". Short and sweet. It's all in the attitude. Don't let your child waste his/her energy by worrying or being secretive. If you come across matter of factly with a little shrug of the shoulders and a smile they'll drop it. Furthermore, if she/he is in a situation that they can't handle, it is nice to know that the teacher is in your corner, that you have explained your condition to her and she sympathizes with you. Telling them that "pooh, pooh" will hit the fan if anybody teases her usually brings a smile to their faces. If they feel that they have adult support at school they will get a better perspective on themselves and feel more confident about life in general.

Sometimes we are blind to the slightest of life's kindnesses. We fail even as parents to accept our child's condition. Many times we feel sorry for them because they fail to exceed our physical expectations without realizing that their spirit, fortitude, and good qualities surpass our greatest dreams. My own experience with some parents who are chronically depressed regarding the plight of their children is that they have unrealistic expectations about their children or the world around them. You cannot change the whole world and you cannot change other peoples' attitudes. Do not beleabor your child's condition. Appreciate and accept your child for what he/she truly is. Consider the following story on acceptance:

A mother of a young Down's syndrome boy once wrote for Catholic Digest that she stopped feeling sorry for herself and focusing on her own loss when she accepted her child's condition (Carlene Mattson, July, 1993). Comfort was first brought upon her by talking to other parents. Knowing that they had walked in her shoes and that she was not alone provided an incredible feeling of comfort. She stopped having pity for her son. Pity was born out of preconceived ideas and misinformation. Her son was clearly more like you and me than different. Her son had his hopes and dreams, a nice smile, and an incredible ability to establish relationships. In a discussion with her husband she pondered what heaven would be like. Would her son be there? Would he have Down's syndrome there too or would he be the boy without the additional chromosome? All of the sudden, an odd sorrow came over her. If heaven meant an eternity without her son as she knew him, it would also be an eternal sorrow. In that moment of sadness she made an enlightened discovery. At one point she had fervently asked God to change her son, now she realized that in the end she was the one who needed to change..and God changed her! Just ask yourself, Would you have had your child have you known he/she was going to have AA? Would YOU rather experience life and have alopecia than not ever lived? Of course you would! If anything, you would be more concerned about a number of other blips in the gentic code of your family rather than alopecia. If a child is less than perfect we don't love them less; often we love them more because they need us that much more. I will NEVER give up hope that someday a cure will be found. Hey! Maybe one of MY children will be the one to find a cure! When people ask how I could bring a child into such an awful world, I always respond with "My child will make this a better world." It's the inner person that makes the real person, not the condition of their hair. If my daughter would be bald in heaven it would only make her halo sparkle all that brighter!

Remember that all of our kids with alopecia are extraordinary in very special ways. From the Bible we can all learn a lesson. John 9:3 tells us of a time Jesus was asked by the disciples why was a man born blind. "And before he healed the man, Jesus replied, 'That the works of God should be manifest in him.'" John referred to himself as the "beloved", speaking of his close love/friendship with Jesus. That relationship is available to all who simply ask to receive it from the Lord. Isn't that incredible? Who knows what your child's AA will do FOR him/her.

What's my point? One of our participants expressed some...reservation in her life...rooted in the fact that she was bald and had a facial birthmark. This lady then went to work at a rehabilitation center where she realized that the children related to her more because she wasn't perfect herself. She now has a superbly rewarding life experience where her previous handicap is now her asset.

Do not let your kid be ashamed of his/her hair loss. Shame is brought on by ignorance. Little or inadequate information may make your child feel different and diseased. They should never feel this way. It weakens them for the rest of their lives. It encourages them to hide, deny their hair loss, have fewer friends, not participate in sports, and generally limit their lives. Children may aquire these traits and grow avoiding confrontational situations and denying their condition.

Consider the following story: "I became AU at the age of 10 and went without wearing a wig, hat, or anything until the age of 14. I dealt with a lot of stares and whispering, but somehow these did not bother me a whole lot until I got to high school. I had a good support network of friends however. One of my most painful memories from childhood with this condition involves my mother of all things though. Soon after becoming AU, my sister, mother, and I had to go inside the bank my mother used to work at for years. I had a sweatsuit on and before leaving the car, my mother turned and asked me to put my hood up while we were inside the bank. I was so shocked and hurt, I think I just did it to make her happy. I don't think I ever asked her about this incident later, but since that time it has come out how much that event hurt me, and I still don't recall my mother ever really apologizing or explaining why she felt the need to hide me under that hood. I guess what I'm saying is, as a parent or grandparent, etc., in an AU child's life, I know you must also adjust to this disease, but your total support and understanding can mean everything to that child. There's nothing worse than feeling as if your own mother is/was ashamed of you. Thus, while being conscientious about how others treat your child, consider the effects you may be having on your child as well." if the parents and adults in the child's life can manage their own reaction and attitude, it really matters little what strangers may do. All your child has is a skin allergy, and some hair falls out without re-growing right away. Shame is a result of guilt, hiding and feelings of inferiority. They have done nothing wrong. They should be honest about their condition to friends and family. Let them wear a wig when it suits them or if it makes them more comfortable around others. However don't deny it is a wig, or that you have a hair loss condition. It leads to shame, lies, denial, and guilt. If they are open and honest about the condition, people will be more accepting. If they hide and are ashamed, they will be afraid to approach you and will fear the worst (AIDS, cancer, etc.).

I hope your child is doing well, you can only encourage him/her along during your conversation. Most parent fear the moment when they have to explain the condition to their children because they do not know what to say. As you may have read, the problem is just the opposite. Let them know how much you care.

I will finish by changing the subject and comforting you as a parent. The followng is a modernized version of an ancient tale. It was told to us by Mr. Ken Moreno while addressing support group of parents of autistic children:

“Taoism (pronounced Dowism) is an ancient Chinese religion founded in the 3rd or 4th century B.C. by Lao Tzu. Taoism is also called the water course way for it believes that life flows in much the same way as a river. And like the river, though we are able to have influence over our lives, we are never able to have total control.

“The Taoist prefers to look at life events without judgement or interpretation. According to Taoism, the true significance of events can never be understood as they are occurring for in every event there are elements of both good and bad. Furthermore, each event has no specific beginning or end and may influence future events for years or even centuries to come. An excellent example of the Taoist view of life is found in the parable of the Taoist Farmer.

“There once was a Taoist Farmer. One day the Taoist farmer's only horse broke out of the corral and ran away. The farmer's neighbors all hearing of the horse running away, came to the Taoist Farmer's house to view the corral. As they stood there, the neighbors all said "Oh what bad luck!" The Taoist farmer replied 'maybe.'

“About a week later, the horse returned bringing with it a whole herd of wild horses which the Taoist Farmer and his son quickly corralled. The neighbors hearing of the corralling of the horses came to see for themselves. As they stood there looking at the corral filled with horses, the neighbors said "Oh what good luck!" The Taoist farmer replied 'maybe.'

“A couple of weeks later, the Taoist farmer's son's leg was badly broken when he was thrown from a horse he was trying to break. A few days later the broken leg became infected and the son became delirious with fever. The neighbors all hearing of the incident, came to see the son. As they stood there, the neighbors said "oh what bad luck." The Taoist farmer replied 'maybe.'

“At that same time in China, there was a war going on between two rival Warlords. The Warlord of the Taoist farmer's village was involved in this war. In need of more soldiers, he sent one of his captains to the village to conscript young men to fight in the war. When the captain came to take the Taoist Farmer's son he found a young man with a broken leg who was delirious with fever. Knowing there was no way the son could fight, the captain left him there. A few days later, the son's fever broke. The neighbors hearing of the son's not being taken to fight in the war and of his return to good health all came to see him. As they stood there, each one stated "oh what good luck!" The Taoist farmer replied 'maybe.'

“When we as parents or family members learn that a child in our family is born with a disability for many there is a sense of tragedy or loss. This sense of tragedy or loss may also be felt by those who know us when they learn of our child's disability. Many of us heard statements like "I'm so sorry" or "It's probably a misdiagnosis." When I hear of a child being born with a disability and the statements that many times accompany such a birth, I think to myself "MAYBE!!" In my experience, both personal and professional, I have found that individuals with disabilities enrich our lives not detract from them.

“The most caring and empathic people or families I know, either have as family members or work with, individuals with disabilities. I believe this greater ability for caring or empathy is because our exposure to individuals with disabilities has taught us to see beyond the superficial exteriors of people and to better see the person that lies within.

“Furthermore, individuals with disabilities challenge our perceptions of life, and what it is supposed to be. This challenge requires us to examine life and its meaning more closely. With this closer examination of life comes the opportunity for insight as to what is really important in life and perhaps what we ourselves should be.”

I am proud of my daughter. It is the small things that count the most. Recently she had fun in a swimming pool while not constantly worrying about her bald spots. I never knew she could feel or behave this way. She has always been reserved, quiet and insecure - or so, I thought. I can't believe she gained this confidence at such a young age. I am glad she understands what she has. I need to take my cues from her on how to handle situations like this! I guess I don't give the kid enough credit. She has taught me about how little importance hair has in relation to the real issues of life. Whether the hair comes back on its own is not longer an issue. I put my faith in God and love my daughter for herself.

WHAT ARE THE LEARNED HELPLESSNESS AND VULNERABLE CHILD SYNDROMES? HOW DO THEY RELATE TO SCHOOL ABSENTEEISM?

School is a testing ground for peer and future work-related pressures. It is important that they go to school because it promotes a feeling of belonging to a group, provides an opportunity to meet new friends and acquire both social and academic skills. Gaining an education in our society is part of your self-esteem. Going to school is important, absences from school should be given serious consderation. Usually there are concatened problems worth considering.

Learned Helplessness

The ability to differentiate yourself from other objects is acquired early during childhood. As soon as the ability is ingrained in your psyche a child with alopecia will recognize that he/she is different from others. Furthermore, repeated visits to the doctor coupled with the frustration of bald patches always reappearing makes the child realize that his condition is permanent, that it won't go away. They stop reaching out for help because they feel powerless to change themselves or their environment. This leads to a special type of depression called "learned helplessness ". The medical background used to explain this type of depression spans the animal literature. In 1975, Seligman designed an experiment where he repeatedly exposed dogs to inescapable electric shock. After repeated stimulations, this researcher found that the dogs eventually withdrew in a seemingly helpless state and continued to do so after being set free. There is now a theory for depression based on this experiment to the effect that past negative experiences falling beyond the control of an individual will influence his future behavior and produce passivity, resignation and "depressive acceptance".

Depression in Children

Depression is difficult to recognize in children. In some cases it may manifest itself primarily as an irritable mood or deteriorating school performance. Some of its characteristics are low self-esteem/lack of confidence, and social withdrawal. Affected children minimize their previous achievements; good grades are called non-significant and musical or athletic abilities negated. Children may lose their appetite, lose weight, and complain of frequent headaches or abdominal pain.

Go through the following checklist and examine whether your child is possibly experiencing depression according to some of its manifestations (multiple symptoms are necessary for diagnosis):

Treatment is initially aimed at decreasing depressive thinking, enhancing social skills, and increasing pleasant experiences. Read our FAQs regarding how to talk to children, how to talk to teachers, and how to apply coping skills.

One of the members of our list server asked how long would I be willing to try various therapy techniques before trying the anti-depressant route with a patient?

Depression in children has only been a recently recognized entity. Believe it or not, there were Psychiatrists in the 1960's claiming that depression did not emerge until the formation of a well defined superego during adolescence. At present, depression in younger children is well recognized but defining criteria vary from study to study. What makes it so dificult to analyze results from the medical literature is that depression can be masked by aggressiveness, tantrums, anxiety, etc. Taking into account the "flawed" nature of such studies, there have been several efforts at compiling the results of different interventions (in technical jargon called meta analysis). These studies do show that antidepressant medications are effective in children. The studies also show that other types of interventions are equally effective, e.g., behavioral, cognitive, etc. I would shy away from using antidepressants in children as a first avenue of treatment because of possible long term effects related to growth, intelligence and behavior (e.g., a "dependance" or crutch on medications).

In the majority of patients that I have seen, depression has been a reactive phenomenon to the alopecia. I have seen it primarily in girls (a gender bias) with an exacerbation during puberty or surfacing at times of parental marital discord. This is not an endogenous phenomenon but a reactive one. I know what the problem is and we have discussed, in another portion of the FAQs, possible coping mechanisms. If the patient does not respond to this conservative management, then I would consider other types of interventions. I would restrict a riskier intervention to patients with long standing and untreated depression or others with a family history which would make me suspect an endogenous (hereditary) component.

Vulnerable child syndrome

In many cases, parents of children with alopecia areata have been reassured by their physicians that their child's condition is a "benign" one. Physicians may explain to parents that the bald spot is likely to go away or that the hair loss won't affect the child's life span. Whether these statements are correct or not, does not matter. The alopecic patch(es) do(es) provide a physical remainder to the parents which bear some psychological repercussions. The parents think of their child as different and therefore vulnerable. This feeling may remain for months or even years after the hair returns. The anxious parents become overprotective of their child. Every medical intervention from there on seems to substantiate the "vulnerable child syndrome", e.g. taking him/her to an allergist, taking the child to a pediatrician for a cold. It is easy to see how a vicious cycle ensues. The child ends up by having difficulties while at school and finally stops going there altogether.

Clinical Characteristics of the Vulnerable Child Syndrome (taken from Green and Solnit, Pediatrics 34:58-66, 1964):

  1. Separation difficulties
  2. Sleep problems
  3. Parental inability to set age-appropriate limits
  4. Parental over-protectiveness
  5. Physical abusiveness towards parent (by the child)
  6. Child described as "hyperactive"
  7. School underachievement, learning difficulties
  8. Excessive health concerns

Clinical Strategies for the Prevention and Management of the Vulnerable Child Syndrome (From WT Boyce: Advances in Pediatrics 39:23,1992 data summarized from M Green: Pediatric Review 8:75-80, 1986):

Prevention

  1. Avoid hyperbole; provide accurate statement of diagnosis and prognosis
  2. Avoid retrospective comments regarding the gravity of past illness.
  3. Following serious illness, offer prospective counseling regarding precautions and dangers; advise rapid return to normal life.
  4. Assure parent that child will be carefully and frequently assessed.
  5. Be alert to overutilization of primary care.
  6. Carefully interpret all positive screening tests.

Management (for the physician)

  1. Meticulous history and physical examination.
  2. Acknowledge connection between past threats and present concerns.
  3. Address underlying parental anxiety; consider psychiatric referral.
  4. Encourage setting disciplinary limits.
  5. Close, regular communication between physician and parent; teach appropriate interpretation of symptoms and signs.

School absenteeism

School is the best instrument at our disposal to achieve both an education and socialization skills. Absentism in children with alopecia areata is rarely due to interfering visits from health professionals or acute illnesses. More often than not, absentism is the result of a "vulnerable child syndrome" (see above). Parents either try to overprotect their child or comply with the child's wish of staying at home in order to feel better. Many an educator believe that after some 6 consecutive absences, performance will suffer significantly, making the child lag behind and thus propriating more absences. Some schools make a child repeat the grade if they have over 30 school day absences in one year.

It is difficult to judge performance in lieu of absentism. Some children are extremely intelligent and may do quite well despite repeated absences from school. This does not deny, in any way, that there may be a major problem. As already stated the parent's perspective may be one of a vulnerable child syndrome.--On the other hand, the fault may be at school. There may be a lack of communication with the teachers. School teachers may not understand how to manage a classroom that have a child with alopecia or they lack the initiative to inform classmates regarding your child's condition. The availability of such information should decrease anxiety and possibly prejudice. As parents, take the initiative and educate the teachers. If necessary, educate other classmates yourself. There is a need for advocacy. You as a parent have a broader view of the problems involved with alopecia areata than any physician.

HOW SHOULD I ADDRESS SCHOOL PERSONNEL REGARDING MY CHILD'S CONDITION?

“Shannon was recently faced with the cruelness of children in her new school. Some of the children would call her baldy. She becomes very embarassed about talking about her aa and was having a very uneasy time in school.”

Well, do you feel anxious when your kid leaves to go out to school? Do you feel like you can't protect them any more? Do you think other kids may be cruel and lack understanding? Then, it is time to take a stance and talk to the teachers. Think of all the advantages. Your kid will be better understood, you will gain an ally (maybe even an extended mom for your kid), and you will have peace of mind knowing that you have done the right thing. There are different ways to go about this. It all depends on your style and personality. The good thing is that all of them work.

Giving a presentation at school can make all the difference in the world to a young boy or girl with alopecia. Some children are bashful, but I haven't seen one able to stop smiling during those precious minutes when we make them feel both special and accepted. I usually hear from the children after they return from school and have already repeated many times their stories to their parents. They relate how they were invited to join a group on the playground and other started a conversation with her/him. My last feedback from a child was specially rewarding and enough to keep you going on for ever, "Is this October 2? I want this to be my birthday. It is the happiest day of my life."

The first thing to do is to decide whether to take a militant participation by directing the presentation yourself or letting the teacher take care of the same. This was an approach taken by one of our participants:

“As much as I don't like to interfere, only because she needs to learn to deal with this in her own way. I felt it was getting out of control.

“I went and spoke to her teacher. I suggested that she send Shannon on an erran and explain to the class as a whole what aa was, that it was not life threatening, and not contagious. The teacher also explained to the class that they were hurting her feelings and making her feel very uncomfortable.

“Since the teacher's discussion with the class, none of the children have made any cruel remarks to her. She is finnally beginning to make friends and invite them home.

“This was the second time I have asked a teacher to explain what aa was. And it worked both times.

“Children seem to make remarks to others when they don't understand something. Once they understand someone else's misfortune there is nothing to make jokes at anymore.”

I have followed a more ellaborate procedure only to assure myself of a presentation where all of the issues I want covered are appropriately discussed. This is a difficult task especially if you are emotionally involved. I have given lectures on the subject and talked to parents as well as teachers all the way from the south of South Carolina to the north of Florida. Still, I choked badly when it was time to speak at an elementary school on behalf of my own daughter. Nothing is more personal than issues related to our family, no? I think about what a fine balancing act one has to do during an AA talk to elementary grade students: educate with an eye towards facilitating an accepting and congenial atmosphere for your daughter so that she remains a part of the group while at the same time not creating undue attention for her so that she feels apart from the group. On top of that, you are also looking to innoculate for a healthy social future for her in terms of continuing acceptance on the part of her peers when they move into adolescence with her.

The school lecture went to prove to my daughter that she has an important edge that most of her peers in all likelihood lack: a stable home with a supportive and loving mother and father. It's what all kids deserve but few have. Most especially, a father who she will always know loves her so completely that he prioritizes her needs/feelings and made her know with certainty that she's important. I have no doubt that this will go a long way to keep her stabilized now and in the future. While I don't have the where-with-all to pad every sharp edge that she may run into in her life, with the evident love and caring, I've given her a comfort zone inside that she can draw on for safety.

These are some of the things that I have found useful for this purpose:

The experience of giving a lecture to school children can be very frightening. I had given several without any problems until it was time to talk in my daughter's school- and as I already have stated, I chocked badly. Again, don't be afraid, be prepared. My personal style doesn't allow me to memorize thing verbatim, if anything I tend to follow general outlines. I like to let the lecture flow, be natural. Before the presentation I have the teacher send a brochure explaining the condition to the parents and let them know the date I will be talking to their children. Copies of the brochure can be taken directly from our home page.

I also try to get the school principal, the counselor, teacher, and the teacher's aid involved. Other people that may need to be aware of your child's condition (and invited to the lecture) include th nurse, PE coordinator, and bus driver. I praise them all on the special role they have in this child's education. I also get to know beforehand some of the child's best friends by name and include them during the presentation (-if I haven't had enough time I have them introduce themselves at the beginning of the presentation and try to remember a few of their names). The following was a 35 minute presentation:

Introduce yourself. Explain how much ___________ cherishes a normal interaction from her/his classmates (that is the purpose of your visit). Bring the conversation to the subject of alopecia by asking the children whether they know of anybody in their familiy that suffers from hair loss (a show of hands). This allows me to explore how much they know about hair loss in general. Some children may be curious about the fact that they had only seen hair loss in adults or maybe they have seen something similar but in another child having cancer.

Do they know what is happening to ___________? After this, I explain to them that there are several different types of hair loss. The one suffered by ____________ is like an allergy. ____________ didn't cause his/her hair loss and you can not catch it (it is not infectious). In addition, it is not caused by something you ate or thought. It is not the result of not taking care of yourself or an injury.

I do a little bit of role playing and ask the children to take ________'s place. (Again) Would they like to be teased, stared at, not played with? How would they feel if any of this happened (different, scared, lonely, sad)? I explain to them what peer pressure is. I finish this part of the discussion by asking them how can they be of help? The answer to this question should be, by being a friend. So, I urge them, as good friends, to treat ___________ as before, to be friends, to keep in touch, and not to tease.

I then show several slides. One is of my daughter Belinda before she lost her hair. In another slide she is receiving her medication and, still, in another, she is with her Dermatologist. I emphasize that even though Belinda's alopecia is a sickness she enjoys many activities. I then show several slides of Belinda with her favorite things and/or activities- these include playing Barbie with some friends, swimming, doing gymnastics, and playing with her dog.

I usually end the discussion by summarizing the presentation and answering any of their questions. Depending on the grade that you are addressing, the questions may be more or less difficult. Some common questions elementary school students may have is whether you use bandaids for the condition, whether hair will grow back, can it be cured, can it get worse, or when did it happen? High school children may be more interested in what causes the condition, is it hereditary, or can it be diagnosed with a biopsy?

I also leave the name of a person (either the teacher or school nurse) as a resource just in case they have future doubts. The school teacher may reinforce the education of her class by asking them sometime later to draw pictures about what they learned.

The following is an example from a presentation where I faced a little time constraint. As you can see there are no strict guidelines to follow:

I used to live for many years in Baltimore, one of our big cities, but decided to move to a small town (Augusta), just as this one, because I got to meet people better. I meet many of them while walking to church or afterwards when discussing the homily. This last week's homily was specially appealing. We had an invited priest, a missionary, that works in "underdeveloped" countries. Some of the stories he told us, really stuck to me. He told us about how he had baptized nearly 12,000 children and in some cases how he had buried some of the children the very same day. You see "underdeveloped" means poor, and poor people don't receive the best of health care, so they may die quite young. Still, this priest was looking forwards to return to his mission. He wasn't bothered that he would have no shoes, or would suffer from hunger- for he had discovered the beauty inside of these people. They were extremely generous and kind people. Even though they had little food, they would share the same with a hungry stranger. You see beauty stems from the inside. It is not the money or external appearance that makes us better human beings, but how we accept others, and share with them as part of a big family.

All of us are different, physically. Some of us are tall, others are short, some have brown eyes, while others have black eyes. (You may include some of the kids by name here). If everybody looked the same your parents would have a tough time picking you up from school!! Recently, a son of a friend of mine, complained about having to wear glasses. His father said, "Son, your grandpa wears glasses, I wear glasses, and now you wear them. It is a way of telling for sure that you are my kid." What my friend was trying to convey to his son was the idea that we must accept our external differences. Take your teacher for example. She has short black hair. Many years from now, however, she would like to be remembered as someone who was kind, generous, or someone who made a difference in your lives- and not as "the teacher with the short black hair". Some of you would also like to be known because you are good athletes, are good at drawing or have a good sense of humor- not for how tall or how much hair you have.

Now, how many of you know of somebody who has lost some hair- maybe your own father, an uncle, or maybe even somebody in TV? Lets have a show of hands. You would not be afraid of them, simply because they have lost their hair. You know it is not contagious, you can't catch it. Some of you may have already noticed some hair loss in __________ (child's name). Some of you may have been curious enough or concerned enough to have asked him/her what was happening? It hasn't always been that way. _________ (child's name) has previously suffered some rude comments regarding his/hers hair loss. I have told __________ (child's name) to ignore these remarks. They usually come from ignorant people that don't understand. He/she is now fortunate to have you all as friends.

I am not sure why _________ (child's name) hair is falling. I have talked to many people regarding this problem. Some have told me its caused by an "allergy". That is why he/she also sneezes during the morning, specially after they dust the blackboard. Some of my friends believe it's caused by evolution. Some of our ancestors had fur, that is hair all over their bodies. As they became more civilized they lost most of their hair. Alternativey I have also told ________ (child's name) that his/her brain may be growing so fast that it is pushing her/his hair out.

There are many different explanations for hair loss, some better than others. My favorite comes from the Bible. It is when John asks Jesus why was a man born blind, and Jesus answers, "So that the works of the Lord be known through him". I have met many people with __________ (child's name) condition and they are all very special. We don't know why somebody may loose an arm, leg or hair. Still, many times they are able to surmount that obstacle, and even be better because of the same. They mature faster, they are more caring and become more sensitive of other people's need.

There are many special people with _________ (child's name) condition. This is the cover of People's magazine (September issue 1996). In it we see one of the most beautiful and best know woman in the world, Princess Caroline of Monaco. You can see that she also suffers from hair loss. I think she is more beautiful now than ever. There have been many athletes with the condition, Mark Murphy of the Green Bay Packers (known not only because of his athletic prowess but because he was also a smart player), Bob Samuelson olympic medalist in volleyball, and Duncan Goodhew olympic medalist in swimming. My favorite person is John D. Rockefeller- one of the most influential men this country has ever seen- had the same condition as ________ (child's name).

[In here I also show some of the letters that can be downloaded as email from our home page project for kids. There are messages from people all over the world that have the condition. I usually read Greg's letter as an example:]

Dear ________ (child's name),

“My name is Greg Garrison. In the second grade, at the age of 8, I lost all my hair to alopecia areata. My mother had alopecia, too. And so did her father. But, their hair grew back. Mine has been gone now almost 32 years. (Wow, I am 40... that's old!!!).

I went through elementary school and junior high school in hats to hide my alopecia. These just made people more curious and suspicious about me. Several children were mean to me with teasing and would pull off my hats. I learned to ignore this and to try to excuse their rude and ignorant behavior, but it was not easy to forgive them.

“Please print my picture from the internet.I am a senior manager of operations with BellSouth International in Atlanta, Georgia. I have lived and worked in Japan, India, England, and many places in the United States. There were people with alopecia in all these places, too! Many of these people wish they were as brave and as good as you. Just remember, and tell your friends and teachers, that alopecia only takes your hair... but it gives you the chance to be better, stronger, and nicer in many ways!

“I have heard many charming stories about you. You are a very strong person! I'm sure you will grow up to be a wonderful, successful, and happy person.”

Your friend,

Greg Garrison

In summary, __________ (child's name) suffers from a condition that is like an allergy. You can not aquire it from him/her. __________(child's name) is still the same kid who likes to play with all of you. I would like you to appreciate and accept _______ (child's name) for whom she/he really is. Are there any questions? (see some examples of questions in the previous paragraphs)

If there is additional time I go over the coloring book with them, if not, I leave the teacher copies so that the coloring book may done at her convinience. A good preface to this learning experience may be to ask the children, as an assignement, to put 10 things in a bag that would describe who they are and how she got to be herself. The exercise will teach the class about family history and intercultural differences. In the bag your child may include pictures of himself/herself with and without hair. This preamble may introduce the coloring book. Incidentally I have found it entertaining if the children paint bald spots with pictures of hearts and stars in figures of the coloring book. I also leave a poster about the condition in the classroom (only for about 2 weeks). I also leave the teacher (and all of the other people present- the prinicipal, counselor, teacher's aid- ) as resources, just in case they have any further questions. I then thank them and leave.

Miscellaneous

If your child wears a hat and the school doesn't allow for one within its dress code, you may benefit from drafting a 504 Plan. Most schools have a no hats rule in the classroom and middle schools and high schools often have a no hats rule at school. However, a hat may be necessary, if anything, to prevent a sunburn.

A 504 Plan is a document put together by parents, teachers, administrators, school nurse, school psychologist and other members of a Student Study Team at a school. It is a Plan that will follow a child from school to school as well as state to state. It has to be written with specific language and fit particular criteria.

Section 504 plans of the Rehabilitation act sometimes covers children in school that may not qualify for funding under IDEA (Individuals with Disabilities Act), but have reason to need special considerations because of special circumstances. It can be somewhat of a complicated procedure to get into place because not all schools are up to speed on what to do or how to write them. There are vast amounts of information on the web about it (here’s one to start with: Frequently Asked Questions About Section 504). You can start by talking with your child’s principal, but you may need to talk to the school district administration or your state Department of Education.

Some of the questions within the 504 Plan may be answered as follows:

  1. Describe the nature of the concer/handicapping condition:

    Alopecia Universalis (loss of all body hair)

  2. Describe the basis for the determination of a qualifying 504 condition, (e.g.) Assessments from Psychologist, Speech, Physican:

    Pediatric dermatologist (Dr. so and so) diagnosed (your child's name) as having Alopecia Universalis in May, 1996.

  3. Describe how the handicap affects a major life activity, such as: learning, seeing, hearing, speaking, working, and self-care:

    The loss of body hair (Alopecia) affects social-emotional sense of well being. Psychological factors are noted in the literature as being a major concern.

  4. Describe the reasonable accommodations that are necessary for the identified 504 student to succeed within the regular education environment:

    At (your child's name) discretion, he shall be allowed the option of wearing a hat of his choice.

If the school is non-cooperative you can obtain assistance from an independent (non-for-profit) advocate group for exceptional children in your area. They may also be called a learning difference group. Advocacy groups are usually quick to respond and help interpt how your state handles the laws. You can also request a handbook of parents rights from your school. That is a federal law that the school must provide you with a handbook upon request or referal.