Does any one have Ectodermal Dysplasia?

It is a genetic disorder that affects hair, teeth, nails and your ability to sweat. My sisters, mother, son and I all have it.

Anyone need someone to talk to?

I may not have all the answers but it helps to know there is someone else out there in the same boat.

Update:

Thanks Micael E; however to clarify, I am speaking of a genetic disorder not a cancer...there is no cure for this disorder...yet. It is caused by a genteic mutation or passed on through the x chromosome.

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  • 1 decade ago
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    Hi

    My daughter was born with this condition and I had never deen or heard of it before. She is now 6 yrs. old. Not only does she have absence of hair, eye lashes, eye brows ect., nails are deformed, teeth missing enamel and pointy, hearing loss, gluacoma, and immune deficiant, but she is now faced with reaccurrent lung problems. We think this is due to the immune problem but the docs are wanting to place a tracheostomy. The problem we are facing now is we are not sure how the skin is going to react to the foreign object and if it will heal correctly around the tube. Would you know any body facing this problem? I guess I could post this question :)

  • Anonymous
    1 decade ago

    Sorry, It hurts more to read more about that

    For every disease there is a cure with nature, time has to come

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  • 1 decade ago

    I don't have a lot of answers but try this website.

    www.glyconutrientsreferences.com

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