Alopecia World
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Tears, Fears and uncertainty
Hello friends,
I come to you today just so upset and heartbroken. I have Alopecia Totals, but that isn't what is upsetting me. I have accepted my condition.
However, My 10 year old daughter has just started losing her hair about a month ago. I sat up with her last night as she cried unconsolably. It's falling out so fast for her - just like it did for me 17 years ago. My heart is breaking for her and I'm so angry and frustrated because there is nothing we can do. It's just so unfair. She said she doesn't even feel like herself anymore because her hair is disappearing.
As parents, how do you keep your child encouraged through a hairloss transition?
How do you handle the "I don't want to go to school like this" issue?
Thank you in advance for any advice you can provide.
Replies to This Discussion
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Permalink Reply by Dena on
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My daughter is 11 and has Alopecia Universalis since the age of 6. I know the struggle of trying to reassure you daughter that she is just as beautiful as always, but they are at a really hard age to be going through this. I am sure you know how focused girls are at this age on their appearances. Throw hormones in there and it is even harder. For my daughter it was finding a sport when she was younger. Knowing physically she is strong has helped her a lot. She hates the sympathetic looks and pity because people thinks she sick. She knows they still think she is sick, but she knows she is a strong person and it helps her to have something to focus on that she can control to a certain extent. Plus she loves to shock them when she does some crazy gymnastics skill. She also accepts that she is different and that is okay. Girls this age are all trying to be a like and copy each other. Once she lost her hair I had to let her make decisions on her appearance. It has been hard at times, but she has found a quirky look she likes and I let her do it. I don't try to push her into what the other girls are wearing. I just let her be her. Even when her fashion sense is pretty out there. About 2 years ago she had some hair come back. Not sure why, it didn't last long. I started out trying to get her to go down and see if someone could do something with it. She was very vocal that she didn't want to do anything with it and didn't want to cut any of it. I finally had to let her do her thing. She now looks back at the pictures and laughs. She even went to a State Gymnastics meet that year with hair only on one side of her hair of various lengths. She says now she just wanted to see what would happen if she didn't do anything with it. This is so unfair for anyone. My advice is let her tell you what she wants. Don't anticipate things. I bought my daughter a dozen cute hats thinking it was something she would want to wear. She wore some at first and then had a fit and told me to quit making her wear hats. She thought I was embarrassed which had nothing to do with it. I thought I was helping her adjust. In hindsight I should have just waited until she came to me and asked if she wanted something like that. Now I let her know she has options. Wig or no wig. Hat or scarf, or nothing. She knows I am here to help, but not to tell her what to do and most of all I am not embarrassed. I think once my daughter was able to do her own thing and realized that I didn't care one way or another she gained a lot of confidence. To be honest the no hair situation starts to fade once people notice she is confident in herself. She doesn't focus much on it, so people forget about it after a while. We still have times where people are insensitive and it hurts her feelings, but honestly that would probably happen if she had hair also. So if she says, "I don't want to go to school like this", then brainstorm what she can do to make her more comfortable. Maybe a wig would make her more comfortable. Everyone is different in how they handle it. I know this may sound silly, but yoga is also good. We tried it with my daughter because I was worried stress might be making her alopecia worse and it really help her learn how to tune out the world for a bit. So if there is something she is good at, focus all your attention on that. Knowing you are good at something helps you gain confidence which really helps to tune out the rest of the stuff. You know how it is when you are so into something you forget about everything else. I wish you guys the best. I know this isn't easy especially for a young girl.
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Permalink Reply by Sandy K. on
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Thank you so much Dena. I truly appreciate you sharing your story and your daughter's story too.
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Permalink Reply by NEW on
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Hi I read your story, My heart goes out to your daughter and yourself. I am 58 years old and start developing Alopecia 2 years ago. Please check out Children Alopecia Project ( goggle) and You tube Life without limbs
Nick Vujicie he is a successful man born without limbs. How this help you encourage your daughter.
May God continue to bless your home
New
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Permalink Reply by Ms Lori on
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As hard as it ...for our own mental health and esp. For children.
I would start by showing her that bald can be beautiful.
Show her pictures of where women and children are intentionally shaving their heads.
It might help.
I AA and I noticed it is more beautiful if you buzz it off..instead of those scraggly hair pieces.
Watch alot of you tube videos on Alopecia ideas.
I have learned so much watching these videos .. hints..ideas ect.
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Permalink Reply by Rascalx2 on
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Sandy, so sorry you and your daughter are going through this difficult time. We love our children and never want to see them hurt, i wish I had words of wisdom for you, just be there for her. Man, this disease is awful... I certainly know your pain and anger. I wouldnt wish alopecia on my worst enemy... If you are going through hell, keep going.. we never know whats down the road.
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"If you are going through hell, keep going..." AMEN to that! There is always hope in front of us. Thank you!
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Permalink Reply by Brian on
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I'm sure you remember all of the fears and anxieties you had back then. The best suggestion I have is use yourself as a role model. You went through all of this and so you know exactly what she is going through. You have also come to accept your condition, just as she may have to. While peer relationships can be difficult enough in school already, I understand her not wanting to go to school for fear of things to come (or that may have already been).
I might suggest that you and your daughter use this as a teaching moment at her school. After all, a school is a place of learning. Set up a time to educate her teachers and principal about Alopecia. Use it as a learning experience for all of her teachers. This way, when something happens in the classroom with the teacher present, he/she can put a stop to it. You might even use the opportunity for 'show and tell' with you there to explain the condition in front of the children. Children poke fun out of ignorance. Once they are informed, that can help show them that she is no different than anyone else and that this is a condition she has no control over... and poking fun at or treating her any different is not necessary.
Good Luck.
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Someone on my former fb page who I used to attend the same church will grew her hair back a few years ago and no longer wears wigs and hats
When I asked her what she uses she said Nioxin Shampoo and conditioner #2. I read the reviews and one said the ingredients are not as good as they were. I think it's really worth a try.
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Permalink Reply by Lynn on
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You are in my thoughts, Sandy. This may not be helpful...but I found it consoling. My mother told me (when I was 13 and my hair was falling out) that humans do not need hair on their head anymore...and that people with Alopecia are more evolved than people without alopecia. Since I was an oldest child and loved hearing that I was "the best" this helped me. It may not be helpful to you...but it is sent with good intentions.
Much love.
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I also have Alopecia Totals. I have had it for over 20 years. I was in my early 50's when I got it.
I haven't been to a conference that is held in June but I would like to suggest that you and your daughter try and go. I believe they have "scholarships" for those that can't afford it. the Foundation is called:
NAAF or National Alopecia Areata Foundation. It is located in San Rafael, CA. They have a magazine that comes out I think every quarter. Lots of times there are articles about children. The meeting in the summer has a childrens group where the kids get together. Here is there phone number.415-472-3780 I think they would be a good help to the two of you. They have been in exsistence since 1981. they are a non-profit foundation. Best wishes!
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