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Questions about EDS


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I saw my doc today, and brought up my concerns about EDS, because I have learned over the last few months that I exhibit almost all of the signs. He seemed to think that I show *mild* signs of type I but not quite enough to be diagnosed with EDS. He did note joint flexibility, long fingers/toes, curviture of the spine, and stretchy skin, but not to the extreme of a typical EDS patient. I'm not sure how to take this...does anyone have any insight?

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Hi Jessica!

Have you checked out this website: http://www.orthop.washington.edu/arthritis...ehlersdanlos/01

Did he mention any possibility of EDS type II (the milder classical form)?

The geneticist I saw told me that my other family members would either have classical EDS or not have it....that it was cut and dry. This doesn't exactly seem to be the case with my family. One sister has very stretchy EDS-like skin on her face, and the other is very hypermobile. The one with the stretchy skin on her face occasionally has problems with pooling blood. The hypermobile one has fainted a few times. My son, a green-eyed blond, has the same stretchy skin on his back that I do. He has had an excessive increase in heart rate and a drop in blood pressure at times, though it seems not to affect him much and he lives a very active life. He is not hypermobile at all. Not sure what to make of all this....and I'm not sure that the doctors have it all figured out either. I think we still have a lot to learn.


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