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.

Does any one have Ectodermal Dysplasia?
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 :)
Reply:Hi there, I have four children, two of them have ED, two have no outward signs of it, but do have "hidden" problems, my husband has it, his siblings and his dad had it, a neice and nephew have ED as well. My daughter (she is 16) my oldest is 24. They are the two that have it. Report It

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





www.glyconutrientsreferences.com
Reply:Sorry, It hurts more to read more about that





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