Anyone in WI with a child with alopecia?

Our 11 year old son was just diagnosed with Alopecia. We are in central WI and I was just looking to see if there are any support groups around here or anyone who can share their stories with us on their child's journey with Alopecia?

Specifically, do you, or how do you notify the school and teachers about your child's hair loss? Are you open about it and let all of the teachers and kids/parents alike know so that you can maybe answer questions? Or do you just keep it to yourself and hope for the best and hope no one picks on them? I am a firm believer in being open and honest on things, but just wondering what your experiences have been? I'm just worried about bullying and such. He is a great kid who will help and stick up for anyone, so I just hope they all do the same, but kids can be so mean!

Any suggestions/advice/tips is greatly appreciated!!

Thank you!

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Permalink Reply by Rose Marie' on December 11, 2013 at 1:11pm

Hello laura

I think it may be very helpful if you contact NAAF.  They will be able to put you in touch with families and support group leaders in your area.  They also have some very good literature around the choices that can help children.  

My daughter lost her hair at 12 she is now coming up 23 years old.  The biggest thing that helped with helping her through the teens and tweens was listening and taking the lead (when she was little) passing on as much information as possible, informing and empowering her through the choices that needed to be made.  

If I can help in anyway feel free to message me.

Hugs

Rosy

Permalink Reply by laura myers on December 11, 2013 at 1:53pm

Thanks so much! I'm sure you know all too well what I mean when I say that I feel lost! I have been reading everything I can online, but I'm having a hard time with not knowing what the future holds and how this will affect him! I will definately message you if I have any questions!! Thanks again!

Permalink Reply by Ted Roberts on December 14, 2013 at 3:03pm

Hi Laura

I'm new to Alopecia World, but I've had alopecia all my life. I remember what it was like as a kid, and while there will be kids who have your back, there are always bullies who will make your life miserable. I have a 25 year old son, and I have 12 and 13 year old foster sons...so I'm very familiar with kids your son's age. Sometimes they can be the meanest little monsters. The trick is to have a good group of friends who are loyal.  From experience, I can tell you...ask your son how HE wants to handle it. He has to live with the consequences of what you say, so it really needs to be what he wants. I guess a lot depends on how you approach the baldness. Is he going to wear a wig? a hat or scarf? or is he going to go au natural? If he wants to wear a wig and keep it as private as he can, then respect that. I wore a wig until I was 18 years old, when I headed off to a military academy and just took it off. I really think that he will suffer LESS if he just goes bald and lets people see that he isn't hiding anything. Not that it's any of their business, but I can promise you that they will make it their business.  I hope this helps a bit. Ted

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