Replies to This Discussion

Permalink Reply by Sara and William on March 9, 2011 at 12:00am

Hey, Breanna, welcome to the group, sorry to meet you under these circumstances:(

There are very few answers to any of the questions you asked. Just be assured that your reactions are normal. Give yourself a little time, and things will get better. Or at least they'll be less overwhelming.

I don't have a lot of time right now (bedtime for the teens coming up fast), but we're here for you and it will get easier.

--Sara

Permalink Reply by Melissa(Breanna's Mommy) on March 9, 2011 at 12:02am

Thank you Sara....Breanna is my daughter I am Melissa, pleased to meet you

I look forward to meeting new people in my situation and learning more.

Melissa

Permalink Reply by Sara and William on March 9, 2011 at 12:08am

Oops, sorry, Welcome, Melissa. Breanna is beautiful, btw!

Permalink Reply by Melissa(Breanna's Mommy) on March 9, 2011 at 12:11am

Thank you Sara :) and not a problem I should have it like most other people do with (Breanna's mom) like that after my name...She sure is a beautiful little girl...How old is your little one?

Permalink Reply by Tanya Reid on March 9, 2011 at 12:11am

My son got this disease at 2 and a half, I like yourself did not know what it was or how to cope. I started out angry too, angry when people would stare, angry there was no cure, angry this would happen to my precious darling. But now I have to tell you it has taken us down a path that I would not turn back now. We have learned what matters, we have taught him to be proud, not cover up and except who he is. He is six years old now, his hair had grown all back in after being 75% bald before that was nice but short lived- his hair has started falling out again-guess what he is excited to be "unique and different again"! Me, I am starting the greiving process again-always worrying! I met a mom about a year ago who went to school with a girl who had alopecia, of course I had a million questions. Sometimes the girl did cover up sometimes she didn't , yes she had boyfriends, yes she was liked, in fact she was held in awe by others because of her courage! Your daughter will be fine, you will teach her that hair means NOTHING , it is just HAIR! Her heart is what will glow, and it will teach others what matters in life. Your right your daugther is an angel.And you came to the right place because us parents need each other, and other adults who have been through this.

Permalink Reply by Melissa(Breanna's Mommy) on March 9, 2011 at 12:28am

Thanks for your story Tanya. It is nice to know I am not alone. I hope that Breanna will be stong like your son and proud and in a way I am glad it came out now and not in the teenage years. It will be that much easier for her to accept. I hate this waiting game with doctors as I am in a small town and they dont tell you much. I even asked a pharmasist today about it and he did not give me much info. I hear stories about shampoos you can buy from Isreal for 500.00 and that there is a 50% chance it will come back. but as a single mom I cannot afford something that is not a guarantee. and do I want to put her through all the hair products they have? Do I want her on steroids? I just dont know. I dont know where to start or finish. I hope and pray that she will be like your son. and I can see she is quit the character she probably will be. I know I need to be strong for her and positive but right now all I can do is cry and question everything

Permalink Reply by Tanya Reid on March 9, 2011 at 8:44pm

I have been to many doctors , naturalpaths excetra, my belief is there is no cure and the sooner I stopped putting my child through it the better. He can go for it if he wants too when he is older, in the mean time, he hated treatments. So I stopped, because honestly I don't think they were working anyway. If he was a girl I sure would consider one of those gorgeous little wigs some girls wear-if he wanted.
It is very normal to be sad about it, nobody wants this for themselves, even worse for our children, visable differences are always the worst.
To help my child deal, I looked up picture of "cool" bald guys, (some days he would just cry and cry when he was four) this started the road to lookkinat it in a new way. I like what Rhonda said about Miss Delaware being a role model, at some point you may want to look up some of the beautiful women with aloepecia with your daughter- anything is possible for her life still -with-or with out hair!

Permalink Reply by cindy Babs on March 9, 2011 at 8:17am

hi melissa. i am the mother of a teenage daughter with alopecia. it's a hardship there's no doubt. it's more than hair. it's very emotionally and psychologically painful. however, it does get better. that's the good news. we parents suffer more than the child i truly believe and as you'll discover on aw.. it's such a big heartache for us parents. life does go on as normal as you will see. our kids move on long before us. it's going to be okay. :) trust us. read the blogs and discussions. they're a tremendous help to me and most. big hug.

Permalink Reply by Tanya Reid on March 9, 2011 at 8:34pm

Please don't take the comment "It's just hair" To mean it's not hard or emotional. It just means that we as family members or those who have the disease need to focus on our strengths, and the things that really matter in life. Unfortunately we live in a society that is materialistic and vain -looks should not have as much value as they do. Our hearts and soul should. So of course there will be hard emotional times, but if we teach them what matters they will come out on top. If we teach them that hair is everything-then I guess that is what they will believe for life.

Permalink Reply by Melissa(Breanna's Mommy) on March 9, 2011 at 10:08pm

I can see everyone is very supportive and I think that is what we all need...As someone who never really heard of this before (my cousins little guy has it but they arent close so I was never really told about it) it is scarey and emotions fly...I am sure that Breanna will handle it all ok..the question will be can I? to see my kids struggle in life is hard but to struggle over soemthing that is uncontrolable will be harder...all i was told at the doctors is this is what she has and she needs to see a skin therapist...nothing more...I walked out of there thinking what can i do? what did I do? where did this come from and why? Mt ex is somewhat co-operating he has told me his mom has this but I was never told and never saw her lose any hair in 9 years...but then he isnt supportingme because the dr appointments that are going to cost me to get there he wont help and instead wants her to go to his place and miss them...this has only been 3 days now and i just want to smack him...he lives 5 hours away and has not come here to see her in 2 years now... why start asking for her when she needs all the doctor appointments and everything.. i dont know what the appointments consist of...and I am scared...what are they going to do or anything...thank you both for your support

Permalink Reply by Rhonda Kelley on March 9, 2011 at 6:01pm

I've gone through the same things and feelings with my granddaughter. The worst part for me so far was watching it all fall out. It took about a year for all hers to finally come out. I felt more helpless than angry. Still do. She was less than 2 when diagnosed, 8 when it all came out and will be 10 in June. We used treatments, shampoos, and even a shot once. I dont recommend spending big money on non prescription remedies. I dont even remember any tests. All I recall is the dermatologist looking at it and telling us what it was. Its a blur b/c it was such a shock. We were in denial for a long time, but she seems to be at peace with it for now. She has such a great attitude and I pray as she gets older she keeps it. I know the road ahead will be bumpy, but if we give them the support and love they need, that will get them through. I agree with Cindy that it seems to be harder on us than the kids. Then I feel selfish for thinking that! I pray God will take my hair and give it to her. I like what Tanya said that its just hair. Thank God she isnt really sick. On the other hand, like Cindy, I agree that its more than hair. Especially as they get older. Our faith in God is the single most powerful way we deal with it. We know He has a plan. Maybe Baylee will grow up and help kids with alopecia in some way. The current Miss Delaware has alopecia. What a role model she is! I know its hard, but in all things, give thanks. Its taken me a very long time to get to this point and cant imagine anyone "giving thanks" for alopecia before coming to terms with it. You will come to terms with it in time. It wasnt easy. I dealt with a lot of heartache and grief. A bit of advice: save some locks of her hair. She may want a wig someday and if you have the lock, it can be matched to the right color. Hair Club for Kids gives kids a new wig three times per year. its a lot of work for me, but Baylee loves it. She also got a wig from Wigs for Kids which was nice but they dont hand them out three times per year. I just learned about another site called Team Alopecia that Im about to check out. Sorry for rambling on so long. It will get better I promise.

Permalink Reply by Melissa(Breanna's Mommy) on March 9, 2011 at 10:18pm

thank you rhonda! i know it will get easier it will be just to get to that point...her first doctor appointment is with a pediatrician and i got a letter today that she has her first appointment with the dermatologist on the 23rd... so i know answers will come sooner then i thought and it is easing my mind...all the support on here sure helps as well...i know i am not alone...i will have to cut her hair to get a lock of it because i havent seen any of the hair that has fallen out yet...but then there is a positive too...it looks like some hair is growing back today...i know chances are it will not stay but then there is chances too that it will...either way I am blessed with my little girl and will accept no matter what comes my way....

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