Replies to This Discussion

Permalink Reply by Cheryl & George on September 21, 2010 at 3:01am

hi kathy,

i know how you are feeling....i was so upset when my daughter lost her eyebrows and lashes =( she was about 10 then. she has since grown them back, currently at 12 she has lost eyebrows again...lashes are still hanging in there. we are fortunate that my friend does permanent make up and has had eyebrows tattooed on, she had this done when she was 11, they were done while she had brows and made a huge difference to her confidence.

that feeling of helplessness is sometime hard to deal with, hang in there! sometimes i think as parents we feel the pain (mentally) more than the kids. both my husband and i have always had a attitude of "she not sick, other than no hair, she is a happy, healthy girl" and conveyed that to her. i am always amazed at how well our girl deals with her alopecia everyday.

currrently our girl wears a freedom wig, which works on a suction basis. she has around 99% of her hair on her head back, this varies from time to time. you have to be bald to wear this type of wig, so she shaves her head daily. it's a hard ask of a nearly 13yr old to go from 10" length hair to clipper cut style!

as a parent, i have bad days...thinking "why my girl?!" we are lucky that we have a great support system around us, professionals...friends...family. i hope that you have that kind of support for yourself and your daughter, alopecia affects everyone in the family.

i hope my words have helped in some small way....alopecia world helped me when we were going thru some tough times...lots of friendly people with words of advice. i always take on board what people suggest, then do what i feel is right for us.

take care
cheryl

Permalink Reply by Kathy De La Cerda on September 21, 2010 at 2:13pm

that's how I felt too like "why my little girl and not me" ? I mean i'm grown and she's only 8 and has to deal with children who may or may not accept her and that's hard I love my daughter so much and tell her how beautiful she is like 10 times a day but it kills me inside when she feels sad and looks at other girls with long hair and cries I feel so helpless when that happens. My family is very supportive and loving and i'm glad for that but they just don't understand how it is for me as a mother to see my only daughter go through that and not be able to do anything about it and so I hope to keep in touch with you ande other parents going through the same things thanks.

Permalink Reply by Theresa Koehler on September 21, 2010 at 9:29am

Kathy,
Sorry to hear about your daughter. I know what it feels like. My daughter started losing her hair last October and was bald by April. He eyebrows are slowing coming out. She is 14 and just started high school. Right now she has had a Hair Club wig for three weeks and it has a huge bald spot in the back. It's like going through it again.

I cope by taking it one day at a time. I try to see that this is part of God's larger plan, but it is hard. My daughter now wants to study genetics and without this, that wouldn't be her dream. She is adjusting well. I am thankful too that she doesn't have a life-threatening illness. If there is any way possible, attend the NAAF conference in June. It was a life-changing experience for both my daughter and I.

Permalink Reply by Kathy De La Cerda on September 21, 2010 at 2:17pm

Well we live in Texas and I hope to find an organization or to attend a conference here if they have any where do I go to try to start my own if I can't find an organization near by? I'm so glad your daughter wants to study genetics and I hope to find a cure oneday because I hate seeing my daughter go through so much and be depressed but i'm so glad to find other parents going through the same things thanks for replying.

Permalink Reply by Karla Uku on November 4, 2010 at 2:14pm

My daughter was diagnosed with AA about 6 months ago. SHe is 3 years old and completely bald. I have run the gamut of emotions from devastated to angry to helpless to thankful. Yes, thankful. I am so very thankful that my girl can get up and run around and play and laugh and scream and is healthy. I see children who are truly sick and i imagine the pain that those parents must be going through is hundreds of times worse than mine. I bet they would give anything in the world to "trade" their child's cancer or disability with my daugther's Alopecia. It is at those times that I realize that I am blessed. Of coure I have the "why my daugther?" days...but in the big picture - it's only hair. Embrace her beauty - and that can not be defined by hair.

Permalink Reply by CHARLENE WILSON (Chayenne's Mom) on November 4, 2010 at 11:06pm

Karla, you have put in words exactly how I have been feeling for the past few months. My daughter was diagnosed wit AA in July of this year and by September she was AU - everything gone! I cried for her and felt like the world have come to an end until I saw a mother on my street having to lift her child from a wheelchair into their car because she could not walk. I think that was my turning point. My little girl will be 2 in December, she is healthy, smart, playful, loving and hitting every milestone that she should. Now I take my little girl out without a hat and everyone comments on how beautiful she is - God is great, and by his grace my girl will be fine - with or without hair!

Permalink Reply by WENDY GUILAVOGUI on November 4, 2010 at 7:57pm

My daughter started loosing her hair in patches before she turned 2. within 6 months her hair completely receded and by xmas she was completely bald. after xmas she lost her eyebrows and ultimately her eyelashes. I always thought her eyes were the brightest assest. We live in ct and even Yale offers little hope. I'm a RN and had never heard of alopecia. I have 2 daughters and my oldest has very thick, kinky hair. My youngest had curly brown hair like me. My brother-in-law calls her cue ball. She's my cue ball and she's gorgeous.

Permalink Reply by Kirsty L. Fry on November 5, 2010 at 2:10pm

My daughter was diagnosed a few days before her 10th birthday, and we have also run through all the emotions. The past year has been difficult at worst and inspiring at best.. Kira is very accepting, and used to say she looked forward to being bald, because all those women on here are so beautiful and strong. When the teasing started at school and she started wearing head scarves she was happy to be doing something different. But, when things got bad, and the tears started more often, I contacted the school, in tears ofcourse lol, and told them something needs to be done to educate the kids of this disease, show them it isn't something to fear. Not long after that Kira was taped doing an interview about AA and answered all the questions , then it was aired as a special on the school tv station. SHe was a Celebrity for the rest of the year lol. This helped to open the eyes of the school to different things going on and hopefully will continue with other issues that our children face. Now kira is experiencing some regrowth, and is happy, but doesnt let her hair loss bother her any more..:) to everyone she is just kira ...To Us she is our world! Hang in there, the first year is the hardest I think! You will be amazed at how she will adapt, let er sit with you and show her the Videos and testimonials on here, It made a world of difference for Kira.

Permalink Reply by Karla Uku on November 5, 2010 at 2:30pm

Hi Kristy...that was great that Kira was able to tape an interview that was aired at school! For the rest of the parents who's schools don't have the capability of doing something like this (or for those children not comfortable enough to speak on AA and have it broadcasted) the National Alopecia Areata Foundation website (www.naaf.org) has a free "School Pack" which consists of a booklet and DVD (7 minutes long if I remember correctly) that explains the disorder. It can be shown in school (with or without your child present) so that children get an understanding of AA and learn the basics, i.e. it's not contageous, etc. The booklet also gives you examples of letters that you can use to send home to classmate families so the parents are also aware of what it is that your child is dealing with. Like I said, it's free...all you have to do is request it. I think the best line of defense we can take for our children is education (meaning educating those who don't know about it) - and with knowledge and understanding comes acceptance. My daughter Mya will always have the stares and whispers when she is around strangers - but if any of those people give me the opportunity, I will explain what it is and what it's all about.

Permalink Reply by Erin on November 5, 2010 at 8:56pm

Amen Karla! I've found my calling as an AA spokesperson! :-) And through this hand some wonderful conversations and met some incredible people. We certainly don't go unnoticed anymore...and what an opportunity to connect with people!

Permalink Reply by Brianna and Mary (mother) on November 6, 2010 at 3:22pm

As a parent of an 11 year old who was diagnosed with alopecia totalis it has been difficult and no words anyone could tell me could stop the tears I shed at night. She has had AT for two years now. She lost her eyelashes and her eyebrows and it was hard for her because kids can be so cruel. Her eyelashes/eyebrows did grow back but her hair has not. She wears a wig that she got from locks of love which is a vacuumed suction wig that doesn't come off until she releases the suction. We didn't know anyone with this condition until I met some wonderful people on AW who let us know we are not alone. As a parent we want to fix everything that hurts our children but we can't. This was one of them. What did help my daughter alot was her Doctor recommended a camp that is especially for kids with skin conditions. This camp was great because she met kids who looked just like her. She made some wonderful friends who she keeps in touch with who understands everything she feels and this has helped her to deal with her condition a little easier. When my daughter is happy I have no reason to feel sad:) I trust that God has something in store for her that will bless someone else and help them to deal with this. For me each day gets a little easier. I used to ask myself, why my daughter and what did I do that this had to happen to her. But there were no answers and I may never know why. What I do know is that I have been blessed with a beautiful, bright, smart, intelligent and courageous young lady. What more could I ask for.
I tell my daughter she is just as beatiful without her hair as she was with it.

Permalink Reply by Tanya (Ash's mom) on November 12, 2010 at 9:50pm

Kathy,
My daughter was diagnosed with AA when she was 4yrs old, but we were always pretty lucky in tht the short bob hair style parted to one side seemed to always cover her spots. However our luck ran out when she was 12 1/2 she lost 85% of her hair and the kids at school were evil. I cried and prayed and felt so helpless. life has changed for Ashton since doing virtesse hair prosthesis, but for me I still struggled with the " why my daughter syndrome". I wander what she would look like with her own hair, how come the girl next to me has a full head of hair and my daughter cant. I'm angry that we have sooo little medical options to correct the disorder. However, in the beginning of this year we had a scare with some blood work that said she possibly had Lupus, thankfully after alot of praying the dr doesnt think its Lupus. I am thankful for my healthy bald, hair prosthesis wearing smart mouthed teenager. We both struggle every now and a then and I just remember it could be worse..
Good Luck