Alopecia World
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Looking for advice and help
Hi I am new to Alopecia World and have lots of questions. My 15 yr old daughter Mikayla was diagnosed March 2010 It started with a huge patch found by our hair dresser which then progressed to more patches... using a lotion started to help regrowth...then 3-4 months ago it started again so suddenly, now she has only a then layer on top half of her head, and she is loosing her eyebrows :(
It is very difficult for her to accept, and I am struggling to watch her go thru this knowing there is little I can do. I have shared with her and we are gratefully it is only her hair...and not cancer!!
But still -it is hard, and it is hard watching her knowing it has shattered her confidence and self esteem. Yes she is in councilling ... she is wanting a wig and we are trying to find out how to go thru this process...any advice would be great. We Live in Auckland, New Zealand. Any other parents living there I would love to have contact with you...as well as anyone else. I have also found apart from our awesome GP there is no help from organisations for her... well sorry not quite true... Canteen is going to meet with us - :) But the other medical groups have turned us down saying she is too old, no funding, or just don't fit there criteria... we are in limbo due to her age.
Thanks for listening and look forward to making new friends on this site.
Replies to This Discussion
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Permalink Reply by Matt (Mikayla's Dad) on
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Hi Amanda!
I know you're exact feelings...we all go through them the same. It's SO hard at first, and then it DOES get easier. It really is a matter of learning to find acceptance, more than putting so much effort in trying to treat it. My Mikayla has gone through all the stages...she started a little younger, she was 11...almost 12 when hers started. We tried lotions, topical steroids, cremes, injections...there really were too many to count. Then we just decided to take what we have and make the best out of it...it's the only way to gain full acceptance.
I can't tell you how many times we've said the same thing you did...we're grateful that it's just hair and not cancer! It is good to keep it in perspective, but in reality, sometimes it's still hard. I promise though...it does get easier. :o)
As far as wigs...we've tried synthetic wigs, real hair wigs, then we went to a full lace custom "system", and right now, we are waiting on the arrival of Mikayla's first Freedom Wig...which is made there in NZ by the way! :) Actually, Mikayla did some before and after pictures for the last company we used, the website is hairdirect.com if you want to go look at them. She is the only kid on there. :o)
Also...if you're Mikayla is interested, I will pass my Mikayla's email address along to you and they can talk to each other. I don't know if she has any questions she would like to ask a girl her own age, or if she just wants a friend that's going through the same thing she is. Anyway...that is an option if you and she want.
I wish you the best of luck, and welcome to Alopecia World...this is a GREAT place to find lots of information and lots of friends that are right there with you!
Matt
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Permalink Reply by Amanda Crichton on
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Hi Matt,
Thanks for replying... I am hoping Mikayla will join, so she can make friends and be encouraged by others stories of what they and her are going through. I am sure she does have questions...If I am honest, I am not sure she has come to a place of acceptance. It is all new to us...and not much help,advice here. Apart from some creams, that is all we have tried, and our GP spoke to a private Dermatologist just before Christmas
and he said to leave all treatment as it doesn't do much for this kind of Alopecia. Will be in touch - thanks again. AManda
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Hi Matt, I have kinda been emotional since Christmas day, it is hard been a single parent and having to try to be strong for my daughter. I don't Mikayla's come to term with it, very overwhelming, I have been homeschooling last 8 yrs and we have enrolled Mikayla at school for 2011 to do her exams, but she is looking at not going due to everything going on at the moment. Is there a website or email addy for Freedom Wigs as they are in my country would like to contact them. How does one know who is ok and who isn't ?? I read some of your reply's and that is why I contacted you? I think I did...brain fuzz can't remember much at the mo. lol
Thank you for your info and I think it would be great for Mikayla to join and make friends...Tallgirl cautioned me on giving out info, are you ok with giving out your daughters email addy... does she do FB?
Maybe they could chat that way first...??
Amanda
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Hello again Amanda.
Tallgirl is right...I would never give out my Mikayla's email on here, and you shouldn't either. I only mentioned that option because my Mikayla has met a couple kids with Alopecia and they are like penpals now. It's been nice for her to have some other kids to talk to. My Mikayla doesn't have a facebook, and she hasn't joined here just because even though she can keep her info fairly private, it still searchable. She did go "public" so to speak on that other website with before and after pictures just because her desire is to be able to help someone else like her, and there were no other kids on there...she thought it was a good idea. Believe me, it took a LOT of discussion and some special dealing with HD before we let her do that. :o)
It is SO important that we protect our kids as much as we can, and Tallgirl is right...there's no way to tell on the internet who your talking to. Believe me...I watch the HD site very closely for comments, and Mikayla never sees ANYTHING until I've seen it first! :o) I also approve the list of people she can receive email from. I know that we can't protect our kids forever, but for now...we can do what we can. :)
I don't know if anyone has mentioned it, but another REALLY good site is
http://www.childrensalopeciaproject.org
There is lots of great information on there, and they offer "Parent Chat Nights" where you can get together and talk about how your coping with different things. They are very careful about who they give access information to, and they can also help you find support groups in your area if its available. You should go check them out.
There's a lady on here by the name of Rosy/Deanna that is the Freedom Wigs rep there in NZ. Her daughter wears a Freedom Wig. They are not cheap, but for someone with Alopecia that wants to wear a wig, they are definitely the best...I think anyway...we've tried SEVERAL other options!
I look forward to talking with you again soon...best of luck with everything.
Matt
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Hi Matt,
Do you ever have days where you feel there is just so much info to take in? Yes I have Rosy as a friend...and thanks again for the other site. I think I will have to take a few days out...and then come back and check out the sites. Sadly Mikayla's gone AU diagnosed yesterday from GP.
Big Sigh... Happy New Year and I will be in touch. I will talk to my Mikayla and see if she would like your Mikayla as a pen pal. She does like getting mail.
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Oh...I'm sorry to hear that. We stopped going to our Dermatologist before Mikayla was ever actually diagnosed with AT, but now she's lost her eyebrows...over the last couple of months...so we guess it's all gonna go sooner or later.
I know EXACTLY what you mean about too much information! When we found the first bald spot behind Mikayla's ear, I started reading everything I could get my hands on. Then I started asking people what they knew about it. My wife had a harder time dealing with it, so she just tried not to think about it...I dealt with it by learning about it. We all deal with things differently. There were some nights that I would be on the computer reading different sites about Alopecia and then I'd look at the clock and it would be 4 AM!! I have a lot of freedom at work, which is nice, but I spent so much time at work in the beginning reading about this disease that I got over two weeks behind on all my paperwork!! It really consumed my life, more than I knew.
This does get easier...you will get past the shock...you both will. If you've read any of my previous posts, I feel like the most important thing to do is to let your child lead you towards acceptance. I don't know what she feels like, but I know what you're feeling. I know what it was like to go through this with my Mikayla, and I know that she taught my wife and I more about personal strength than we knew we could learn. She WILL get to that point, but SHE has to do that, and you will be there to take each step with her, and I promise...you will grow as much as she does...if not more. :o)
Happy New Year to you as well...talk to you soon.
Matt
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Hi Matt,
I saw the reply's on email and just thought I would reply and then hop off! I accept what is happening to her..Don't understand why, and it saddens me to see her go through such hard stuff, but I am there for her, and have been these past months and will continue to be...it is just hard trying to get the help she needs,and be rejected all the time. .I think maybe My reaction was delayed...it's only really hitting me now...what I have found though is if I don't think about it, and don't look into anything about it, I am actually coping, is this wrong? I think that is how Mikayla might be coping too! I read and chattered on phone yesterday, did some housework and watched a movie, at the end of the day I realised I was ok and hadn't cried at all lol Today I am taking the girls out shopping (mikayla & friend who has been here for the week) And getting some reading material from the library...fiction....I think what I am finding hard is knowing there is no quick fix, and hearing how long some have this condition for. Have a nice day!
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I think you're spot on...if not thinking about it is the way you need to cope...Mikayla as well...then that's what you need to do. I think that might be part of the different in guys and girls too. :o) My Mikayla never thinks about it, and when she does...that's when it bothers her. My wife...she deals with it the same way...she just doesn't think about it. Me on the other hand, I felt the need to be obsessed with it until I there wan't anything else that I COULD find out about it!
Time will make it easier...but time is one of the hardest things to wait on!
I hope you girls are doing well.
Matt
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Good Morning Matt,
Yep today is a new day...check out what I wrote not long ago about some fuzz.
Interested in your thoughts! And yes we are doing better! Thanks
Have a great day
AManda
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Permalink Reply by Tallgirl on
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Please do NOT give out your daughter's e-mail address, as there may be adult males out there looking to "friend" young, vulnerable girls for wrong reasons and unwatched conversations. Best to stay online with AW, and alert rj and Cheryl if you see anything funny. Also, do not use real names or cities...this is worldwide. If you type no city, the default will just name your country. To find a local support group, see www.naaf.org. Your daughter can join the teen group on AW, with same precautions. There is also a chat on here, as long as she stays anonymous and generic. If anyone asks for home e-mail or address, do not give it. Some parents here let kids write through them as members, in order to monitor communication. I am not sure until what age this is done...it depends on how mature a teen is and how much you trust her to guard herself. Also try the New Zealand group on this site under GROUPS. Good luck!
By the way, I am 58 and a teacher. My own alopecia started when I was about 10, so I know what she is going through.
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Thank You Tallgirl for the info. Appreciate it, I just haven't been doing so well (neither is my daughter) these past few days and not really thinking. I have found the NZ site... But finding it hard to get anywhere around it...I think I am needing friends before I can find anything out...and I don't know how to do that. lol
Wow you were 10...do you still have it? May I ask a question... do you know why people get it? Is it due from stress, or something else, or multiple reasons. Thank you and Bless YOu.
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I have AT now. AA was 1963-1966, 1968-1972, mid 30s on top, then AU about 1998, AT since 1999.
Go to www.naaf.org for all the medical details. Recent info says it is linked to genes for diabetes, r. arthritis and celiac. We already have the disposition at birth, then...no one knows what makes it appear, but stress may be a factor (about a month after a stressful event). Shots and creams "work in three months." but so might leaving it alone. There are plenty of discussions on this site and the naaf (National Alopecia Areata Foundation) about all this, so start reading. I will "friend" you so you can read my page and all my blogs...and see my wigs. Many teens are on this site, and some have very positive outlooks.
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