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Permalink Reply by Rose Marie' on October 6, 2008 at 3:43pm

Hi

I have just read through some information on your daughter's condition and I truly don't know what to advise that will help. But possible a light hat with hair attached. Go and have a look at www.naaf.org and pop into their market place they have quite a selection of soft scarves and hats.

(After reading the info I could find on the condition your daughter is dealing with I don't think I would recommend any type of wig for her at this time. As all are hotter than nothing or growing hair and most will cause friction of some sort for her).

I don't know if that will help, but I hope a little.

Rosy

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Permalink Reply by Rachel on October 6, 2008 at 8:06pm

I agree with Rose Marie. In the process of looking up information about EB, I can't imagine what your daughter has overcome in her life. I think I would stick to scarves and hats for her. There are some really cool scarves out there for young girls. Maybe check out the beau beaus by http://www.4women.com/. I don't have one yet, but I hear really great things about them. Wigs definitely create friction (if they fit correctly - where she won't have to worry about falling off).

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Permalink Reply by Melissa on October 7, 2008 at 2:06pm

Rosy and Rachel:

Thank you for your responses. I'm thinking scarves and hats may be her best option as well. Although I did look at the hats with hair that someone else mentioned on another post yesterday. Since those have the cool max lining they maybe an option. I saw on their site a spray on adhesive product to help them stay on more securely. I can't remember the name of it, but have either of you had any experience with something like that? We think that might be an option.

She has had a time with her EB mainly on her feet up until this point now we have another area of the body to contend with. She has always been tough with her EB which is maybe why so far she is taking the news about her AT in stride.

Thanks again.

Melissa

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Permalink Reply by Verdonck Katrijn on October 11, 2008 at 11:15am

Hello Melissa, I think that their are several solutions because people are doing a lot of research on how the linning of wigs can be approved. My friend Annick Jeangout has a hairclinic and she helps out a lot of people with hairloss problems like hairloss after chemo, TTM, alopecia,... Next to scarfs with hairpieces and hats she also has wigs with synthetical and natural hair but more importantly with sort of a sticky, breathable lightweight linning. Some wigs can even be used with your own (remaining or new) hair growing through them. Used for people whose hair starts growing again when they've recovered from cancer. Unfortunately her website is in flemish but some photo's speak for themselves and you can always send here an e-mail : info@haarkliniek.be Please look at the website www.haarkliniek.be , skip the intro and look under "haarwerken natuurhaar". The wigs are not cheap and personaly I would go for the scarfs with hairpiece until your daughter stops growing. These wigs are custom made and do not cause any blistering. In any case Annick knows a lot about the problems linked to alopecia and she will be able to answer any of your questions. At present she is abroad untill the end of this month but I'm sure she and her team can be of assistence. Best regards,

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