What is Ectodermal Dysplasia
Ectodermal dysplasia is not a single disorder, but a group of closely related conditions. More than 150 different syndromes have been identified.
Ectodermal Dysplasias are de...
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Trying desperately to find someone who is familiar with ED. I am becoming discouraged. The doctors have told me this condition is rare, but I was hoping to find someone around me who is going through the same things with their children.
Posted on 04/09/07, 12:04 am |
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I had ED. I am 33 years old and my mother had it. I have two children who do not appear to be affected. I think my case is mild compared to what I have heard from my doctors. My symptoms range from missing teeth (teeth that were never there) the ones I do have are healthy. I have very thin hair and hardly any body hair at all. Not a bad thing on my legs. My biggest problem is that I hardly sweat at all which can be dangerous. 
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Jordan also has the sparse hair, missing and pointed teeth, and lack of sweat. Because he is only 16 months old, we are doing our best to determine how well he can tolerate the heat. It hasn't been terribly hot here yet, but his temperature does go up after he's been out playing. We've started carrying around a spray bottle to use when he needs to cool off. Any more suggestions?
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