Replies to This Discussion

Permalink Reply by Vicktoria (Katya's mom) on May 4, 2009 at 11:17am

I think that Sabina is right. We as parents and adults tend to transfer our fears to our children. My daughter is 13 and lost all her hair when she was 11. I was devastated but decided to just concentrate on what my daughter needed to feel good and get that for her. My daughter did not want to be bald in public so we got her really good wigs. She had a supportive school and supportive friends so we never had to deal with teasing. Going to a small private school and total honesty with her friends was the key to this. I have taught her that honesty is best and people are always curious about something that is different. So if asked, she has always told people she wore a wig. Obviously, she does not run around telling everyone. She has told good friends, people that might ask or if she is in a situation were she may need help with the wig. She is in performing arts so sometimes she needs help with hairstyles ect. I think that if the parents are afraid to be honest and are embarrassed, it transfers to the kids. I've tried to teach my daughter to be proud of who she is and to NEVER be embarrassed.

She and I have talked about the fact that everyone has something that they have to overcome in life. Her obstacle came early in life and she is doing great. She is a stronger and more focused person because of dealing with loosing her hair. We've joked around that her alopecia experience will make a great college essay.

I am sure that as she gets older she will deal with people that are not as caring or nice. It is my hope that the confidence she has now will help her through any difficulties. It is important to remeber that every child has to deal with some type of teasing, hearbreak and other difficulties. It's just a part of life. I've tried to remember this as I deal with my daughter as she enters her teenage years. Alopecia is not the focus. Life is full and all types of experiences, good and bad. And sometimes things we think are bad experiences sometimes turn out to be good in the end.
Vicktoria

Permalink Reply by Siphnaki on July 20, 2009 at 12:25pm

Hi. My daughter was almost 5 when she was diagnosed with AA. She did got to Totalis and then was progressing to AU but it halted and has been various types of AA since (no eyebrows, roaming spots - now at 60% loss, loss of body hair, etc.). Anyway, we educated everyone. We used the NAAF video and send a letter to all school staff and parents and found that once people knew, whether young or old, it took away the curiosity and they could move on. We are lucky enough to be close to one of the CAP groups and attend meetings regularly which have been HUGE for her self esteem. She has worn bandanas in the past but hasn't covered up at all for well over a year now and is totaly comfortable that way. We are always honest with her and don't focus on the alopecia except when she's trying to accesorize her look (she's now 9). And yes, I think how we handle it affects our children significantly - they model our coping mechanisms after all. Now, she is comfortable enough to talk to people about it and when we do fundraisers she is fine talking and/or being used as a "show-n-tell". She has come to see the positives that have come of this as has our family and I can only hope that everyone can get to that point. That being said, I know we have some difficult years coming so I too agree to follow your child's wishes. I have a feeling we may end up going the wig route as well - the important thing is to keep your child confident and happy! As for a support group up your way, I'm not aware of one - the only CAP group close is all the way in Missouri........ Is it too late to suggest Alopeciapalooza Aug 7-9 in Philadelphia?

Permalink Reply by Metoaka Perez on August 5, 2009 at 12:48am

I have a 12 year old son who was diagnosed with AA last year. I first went to the principal and asked if my son could wear a hat at his own discretion, to hide his bald areas on the top of his head if he felt uncomfortable. I later talked with his teachers about comming in and talking with children and teachers in his class. It all went well. I ordered a free video that discusses alopecia and what it isn't. I used photos of myself showing my bald spots. ( I too have alopecia). My son and I answered many questions that students and teachers had. It was very educational to everyone and actually helped my son to cope with it amongst his peers. He chooses not to wear a hat, but to be proud of how he is. There have been no problems with other students and my son is now very comfortable answering questions about his experiences with alopecia. We are all aware that there may and will be more bouts with our hair loss, but have decided to take it in stride.

Permalink Reply by Jen Deletto on March 2, 2010 at 12:26am

Children's Alopecia Project has a ton of good information on their website.

www.childrensAlopeciaProject.org

it is all geared towards children!

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