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Permalink Reply by Rose Marie' on July 23, 2008 at 6:07pm

Hi

I'm also a Mum. It does ease and does get easier. What I found helped me was being very procative in finding solutions that helped me and my daughter move on with life. Talking and communication was and continues to be a major factor in my life with my daughter and her Alopecia Universalis. She got this condition when she was 12 and is now 17 years old. Can you tell me what is stopping your daughter from doing the things she wants to do? I understand it is because of her hairloss (but sadly thats the one thing you can't control) so, I would start trying to concentrat on the things you can help to control. What will make her feel comfortable? What will make her feel safe again? What will empower her again to be all she could ever be?

Hope that helps a little.

Hugs for you both - I understand how terribly difficult this is.

Rosy

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Permalink Reply by Mandy on July 23, 2008 at 6:28pm

Oh honey. :o( My suggestion would be to expose her to others by going to local support group meetings...get a penpal from NAAF...there's telephone support if no groups near you. Is she on this website? This website is definitely family friendly - lots of kids here - so I would recommend letting her talk to others on here and see the stories and pictures of others.

I know that I can't fully relate because my AA just hit me now as an adult. It must be difficult for kids. There are groups on this website you should look at...one for Parents of Children with Hairloss, one for Adults Who Have Grown Up with Alopecia (these are adults that know what it was like to have it as a child), and one for those Newly Diagnosed.

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Permalink Reply by Trina on July 24, 2008 at 8:24am

Tray,

This is the hard part of being a kid with Alopecia. Since I went through this in childhood, and as an adult it is hard but your support will make it better. There are no words to express that my heart goes out for each of the kids going through this as well as my own. This is one of those things that a strong support system will help. I am an adult and still am leary of other people but it will get better. There is always a light at the end of a tunnel.. Have Jazz call or email me her and my daughter could talk I think it would help her a lot. Send me a note and I give you the information. I think if she knew what other kids her age were doing and how to get through it it can only help her.

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Permalink Reply by Linda on August 6, 2008 at 4:02pm

Hi Tray's Mom, I know you're tired of hearing this, but Tray is a beautiful young lady and you have done a great job--from what I've seen on here--in raising her and helping with her Alopecia. It is hard to say when things will be okay for her. I first had AA when I was about 8 or 9 and it never went away, my hair never grew back, I had to adjust to the way things were definitely going to be. I know how Tray feels, you long to be normal, I just wanted to learn to swim, I didn't because I didn't want to lose my hair in the water :-) Does Tray still have hair? If so, I know plenty of styles to work around the spots if they aren't too big, let me know, maybe we can come up with workable solutions for now...

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Permalink Reply by Linda on August 6, 2008 at 4:04pm

OOPS, Sorry, I called you Tray's Mom, I meant Jazz's Mom!

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