Here’s a list of the 10 most common kinds of ectodermal dysplasias among people who are registered with the NFED. I find it interesting that the largest group is actually “type unknown”.
When I was growing up, I knew about the NFED and a little about ectodermal dysplasias. From what I saw in the newsletters that came in the mail, it seemed like everyone with ectodermal dysplasia had HED. I felt like I was the oddball with EEC. I knew there were others out there, but not many.
I empathize with those who do not have a clear diagnosis. It must be frustrating not really knowing what to expect, or whether a particular issue you’re having is related to ectodermal dysplasias or not. Even though I knew my diagnosis early on, we did not realize everything that was associated with it, because at the time, we only knew one other person who had it. Now, of course, I realize that just about every health issue I’ve had is related to my syndrome.
Anyway, on with the list!