Replies to This Discussion

Permalink Reply by Piotr on December 18, 2011 at 9:15am

Hi Jules. I feel your pain and I truly understand. Your journey will be a tough one psychologically for you, and especially, for your 3.5 year old daughter. In the end, both of you will turn out to be superb human beings. When my hair fell out at age 6, my mother bought me a wig and tried to hide my medical condition. Bad idea. I wore a wig until the age of 12 when I finally found enough courage to take it off, stop lying to people that was my hair, (LoL), and accept me for what I really am...a human being with a medical condition. Please tell your daughter the truth and tell her to tell the truth to other kids. Other kids will understand. There will be hurtfull times. Please support her. My parents are very religious and I am too. Sure there times one asks himself, "why me?". Only God has a plan for you, that you don't need to know yet. Believe me, it will be a tough but rewardingjourney. I don't want to sound like a priest, find comfort in Matthew 5..."blessed are those that..." If I could replay my life, I would not wore a wig and told the truth to other kids. It would have been so much easier. My 8 year old daughter has hair. I think girls have it much harder. If you need to talk or have questions let me know. Take care

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Permalink Reply by Jules1984 on December 18, 2011 at 1:07pm

Thanks for the reply :) I don't plan on getting her a wig unless she tells me herself that she wants one. She is too young right now and most likely wouldn't keep it on her head. I think that if I cover her head she'll feel like there is something wrong with her and begin to feel self conscious. She has a gorgeous head and I want her to show it to the world... which she does everyday. I just don't know how to explain to her, in terms that she would understand, that her hair is falling out. I want her to be able to stick up for herself and tell the truth to other children who are curious. I'm just cuirous what other parents out there told their kids and how they handled it. She knows she has no hair... but she doesn't know the reason behind it. I truly believe that everything happens for a reason and I want her to believe thats someday aswell.

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Permalink Reply by Piotr on December 18, 2011 at 2:13pm

Julie, it will be fine. You are doing the right things regarding the wig. Also, I think my mother hurt more that I have alopecia because she would see me crying when other kids teased me wearing a wig or when it accidentally fell off at gym causing even more embarassment for me. She would order foreign creams, medications, rub onion juice on my scalp, etc. Causing more disappointment for me when the stuff didn't work. Also, by facing the fact there is no cure for alopecia universalis because if there was, we would not have this terrific website. Talk to her often. Both of you need it.

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Permalink Reply by Cindy on December 19, 2011 at 1:02pm

HI Jules,

Sorry you have to go through this. My daughter was 5.5 when she started to loose her hair and was getting ready to start Kindergarten. She is no a healthy 10 year old. The best way we explained it to her was that he body was allergic to her hair and we explained different kinds of allergies. She is also older then your daughter at the time. There are numerous childrens books out there that you can read with her to help guide the conversation. For, one The Girl with No Hair. There are a few, but I can think of their titles off hand. I do suggest contacting Betsy at the Childrens alopecia project. She would have a list of book titles for you. You may also want to join their data base at no cost and they can try to connect with you other families in your area or check to see if there is a CAP support group in your area. I run one in Mass. good luck, Cindy

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Permalink Reply by Rose Marie' on December 19, 2011 at 4:30pm

Hi

I feel it is important for you to give your daughter age appropriate explanations. Maybe like 'I have alopecia areata, that means my hair won't grow, you can't catch it and it doesn't hurt it's just that my hair is no hair, like yours is brown or red hair.'

Giving her choices on how she may like to present herself can be empowering for her as well. I know a lot of little kids who love hats, scarfs, buffs (to protect themselves from the sun or cold). At this time I don't believe a wig would be of great want to your daughter, but as she grows older she may want to try this is an option. Be open and knowledgeable about what you feel will help. I personally think that this has to be a cooperative decision with the parent taking the lead by educating themselves on the pro's and con's of any decision, while keeping the child informed and engaged so any decision is a happy one.

My daugher was diagnosed with alopecia at 12. I took the lead and found out as much as I could about the alternatives available to help her with everyday life. At that age my daughter and I did decide a wig was going to be of help and we really have never looked back. She doesn't wear her wig 24/7 but she does like to go out with her hair on etc. But when she runs with me she will often go without anything on her head. Her choices work well for her.

Hope this all helps.

Rosy

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Permalink Reply by Jules1984 on December 20, 2011 at 10:15am

Thanks everyone... all of them are great advise. I'm definately going to look on Amazon to get those books. I think she would appreciate them since she absoluely loves books. I like the explanation that Rose Marie gave me... I think my daughter would understand that more than the allergies... she may be too young to understand fully what allergies actually mean. Thanks again everyone...

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Permalink Reply by Georgia Gardner on December 21, 2011 at 6:01pm

Hey Jules,
If you're asking how to explain the medical side of things, its definately something I would recommend. I do remember that my mum helped me understand by showing me the "magic school bus" video where they shrink and explore the body. The episode dealt with the immune system in a way that led into the discussion of alopecia. If you don't have something like that, then explain very simply the fact that the body keeps itself safe from sickness by attacking viruses and something the body gets confused and attacks other things, like hair. just being honest and straight about it really is the best thing.

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Permalink Reply by Storm_Uchiha on February 20, 2012 at 10:41pm

There's really a lot of different ways to explain it. I can't remember how my parents explained it to me but when I started to get teased they told me what to do and I was fine. My friend whom also had Alopecia brought a book for us to read together during one of our playdates and I remember it well, it was called Princess Alopecia about a girl who goes through AA. It was a story I had loved when I was little and going through it. It was on amazon last I checked and I think it's a great book to get for her. Anything to help the transition and tell her that she's as beautiful as can be.

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Permalink Reply by Jules1984 on April 22, 2012 at 11:40am

I'm curious what your parents told you to do when you were getting teased. My daughter is starting school in September and I need to be prepared for these things... thanks.

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Permalink Reply by Piotr on April 22, 2012 at 12:15pm

Hi Jules, I remember my mother telling me not to listen to people that teased me. She told me just to ignore them because God will punish them. Basically, to turn the other cheek. I remember being sad because I wanted to say saomething back. I got to a point where I learned to stand up for myself. If I was to do it all over again, I would say..."Oh you like to laugh at other peoples medical condition! What if your hair fell out and others laughed at you. Would you like that?" Well, that's just me. Your daughter will need to see other bald people (like alopeciaworld) to feel comfortable with herself. Get her into sports or a hobby so she can channel those emotions someplace else rather then contemplate on them. Rosy also had good ideas. Good luck

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Permalink Reply by Storm_Uchiha on May 4, 2012 at 6:43am

My mom told me to not let it get to me and if they put their hands on me to let them have it and not hold back. Looking back on it I really tried to handle getting teased well but it's never easy...Never was... It was always the 'You must be a boy if your bald' stereotype and one time two boys grabbed me and started feeling my head. I wish I had fought back. When I got older and people bullied me that's when I started to use my wit about me and made it clear they weren't going to get to me and hurt me.

But for a young child just starting school the best thing I think can be done is to ask the teachers to let you talk to them and explain your daughter's condition to quell any urges from her peers. And then when it comes to trying to make friends just let your daughter's personality handle it. The real friends who will stick with her til the end are the ones who won't care about her looks.

My best friend and I met when I was dealing with bullies in my neighborehood and she didn't even ask why I had no hair and when I asked her why she said: "Well you don't ask me about what might make me uncomfortable....Why should I do that to you?"

I just wish you luck....I grew up with a lot of confidence and when I got teased my temper flared and I admit I ran my mouth more then once to get my point across to the thick skull'd ones. I just did what I needed to do to get them to stop bullying me that's what I mean by didn't handle it well...The biggest offender was a person I had known for years who made it her life's mission to hurt me mentally and it wasn't until my real BFF came along that I didn't ever have to worry about being teased.

Because she had my back...And more followed and backed me up. People I would just meet would say to me: "If anyone hurts you come get me and I'll make them pay."

Again...A lot more of my confidence came when I was older and able to overpower my foes with words and knowing that their words are just that of foolish people bred from foolishness...

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