my daughter

Hi my daughter is only 12 and was diagnosed when she was 10 she has lost almost all of her hair. This has been devastating for her and heartbreaking. I have went through a program for her called Children with Hairloss and they will provide a wig for heronce a year till 21 but have found no support group for her. She has been harrassed at school and yesterday a girl pulled her wig off in the hallway she was devastated. I have went to the school 4 times this year and also had the police department involved with this. I am at a loss on how to help my little girl. If anyone can help us and try and ease her pain that would be so helpfull. She is so beautiful. And kind and my heart aches for my daughter. Thank you

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Permalink Reply by Cheryl, Co-founder on November 16, 2011 at 12:21pm

Hi, I think you need to talk to Jeff at the Childrens Alopecia Project. I know they have support contacst and groups across USA and hopefully they can provide you with the help that you and your daughter need.

Permalink Reply by oregonmom on November 16, 2011 at 1:34pm
Thank you I will try that. Im soooo mad about the way kids areso cruel. To pull my daughters wig off is so unacceptable. She is so hurt, embarrassed and depressed. Im so worried about her emotional wellbeing. Thank you for responding
Permalink Reply by Tallgirl on November 16, 2011 at 11:56pm

If the school does nothing, ask for them to pay for an interschool transfer to another school in the district, or sue the school district. Have the school nurse talk to the students, and get a professional adult or cool teen with alopecia to give an assembly to explain alopecia. NAAF has videos, and support contacts in different states. www.naaf.org. I started losing my own hair at 10, but I hid it and didn't need wigs until 15. No one ever knew.

Permalink Reply by velvet on November 20, 2011 at 6:58pm

where do u live i found that in high school when i got it there wasnt any bullying because i went to a strict catholic school however wen i went to 6th form i got bullied which was one of the main reasons why i left i couldnt walk down the hall without some girls saying stuff i am so much happier now i am at college and havent been bullied all the people there know about it because i told them also the teens that i work with know the thing with young children is they dont have a clue wat it is . i have had my wig pulled off by a guy and i turned it round and made him feel bad but if it was on purpose then that is cruel and nasty and i cant believe that the school has done nothing much love to ur daughter and to u xxx

Permalink Reply by Karen Smith on November 20, 2011 at 9:22pm

My daughter's alopecia developed in highschool. She did not experience the bullying but had a good support group. She uses all lace wigs that she tapes on with supertape. She was able to tumble and cheer. If someone would have pulled her hair it would tear her skin before it would come off. This gave her security. Having said that she is succeeding in college, has plenty of friends and a steady boyfriend that says he doesn't care about her alopecia.My daughter inspires everyone because she just doesn't let it get her down. I just wanted to encourage you that your daughter can have a full wonderful life. We are here to help.

Permalink Reply by Heather on November 22, 2011 at 12:13am

I was diagnosed at age 11, and am now 17, so I sort of understand what your daughter is going through. When I got my first wig, I had girls try to pull it off and try to bully me about it. Something that doesn't necessarily cross your mind but that really helped was to explain to the students exactly what is going on. A lot of kids bully or make fun of what they don't understand. This is an example of that. A family friend of ours is a doctor, so we had him come to my school and explain to the kids exactly what I had, and they got to ask any questions they had about Alopecia. It's a little bit scary, but I found this to be an extremely positive experience for me! Once the kids understood, they didn't bother me again, except to ask the occasional question, which I more than willingly answered. I'm in grade 12 now and have had very few problems with bullying since then. The key for me has been to be completely open. Gossip and bullying happens when there are secrets, so I am very open and proud of my alopecia, and people respect that.

Permalink Reply by oregonmom on November 22, 2011 at 1:39am
Hi Heather, Thank you so much for your response. I would love for at some point that my daughter has the same positive.outlook on this as you do. My daughter is such a beautiful young vibrant angel,and is a gift to this world. I'm currently trying to find a support group and want her to be proud of who she is. I just found this site and am working on finding all it has to offer. Thank you and know we are all blessed. Loretta
Permalink Reply by Heather on November 22, 2011 at 10:15pm

Hi Loretta, just thought I'd add that if your daughter is really wanting to talk to someone I would be glad to talk with her :) Over the internet or on the phone or whatever she wants - I'm sure it would be nice to speak with someone who has gone through a similar situation.

Permalink Reply by oregonmom on November 23, 2011 at 12:13am
Hi Heather, I will let her know and see what she would like to do. I found a book I want to get her its called If your Hair falls out keep Dancing. The Author is jere in Oregon. Thank you so much and have a wonderful Thanksgiving we will chat soon. Im so excited! Loretta
Permalink Reply by Marsha Lampert MBA MS on January 6, 2012 at 9:50pm

http://www.gemtress.com/childrenswigs/
This is a superb website for your daughter
-Marsha

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