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I have a daughter who has no hair on her head. She was diagnosed with Ectodermal Dysplasias. The Website NFED.org is her only support. Has anybody heard of this condition?

Kayla is a very outgoing child. She is eight years old. People and kids make fun of her because she wears a hat to school.

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Army767

Asked by Army767 at 12:45 PM on May. 22, 2009 in Kids' Health

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Answers (3)
  • Have you thought about a wig? They have very real looking ones.
    Anonymous

    Answer by Anonymous at 1:05 PM on May. 22, 2009

  • I haven't but would LOVE to make her some flower headbands for free if she would wear them. I will email you some pictures.
    mommymine3

    Answer by mommymine3 at 4:13 PM on May. 22, 2009

  • Hi: Our daughter was diagnosed with ED a couple of years ago. She's only 5 1/2 so we haven't had to have any treatment for it yet. We noticed early on that it took a long time for her hair to come in and her teeth and I've never had to trim her nails. One day I googled hair, teeth, nails and ED came up. I starting asking questions of the dentist and pediatrian and viola! Her teeth are cone shaped too.

    So the dentist took a panaram x-ray and it shows she might have 6-8 permanent teeth missing. So we are facing potential braces, prosthetics and, eventually, implants. We found the National Foundation for Ectodermal Dysplasia has a wealth of information (brochures, dentist lists, etc.). The even have information on getting medical insurance coverage for treatment since it's a medical condition.

    You probably know a lot more than me at this point. Our daughter's case is mild as far as the hair goes.

    mom from South Carolina
    tjpsc

    Answer by tjpsc at 8:14 PM on May. 25, 2009

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