EDS can be tricky -- I missed it on myself the first time through! Basically, you look to see how loose your joints are, and go from there. No one thinks they have loose joints, it seems, but there is something called the Beighton scale that helps. When I ran through that, I realized I scored a 9 out of 9 -- I was super flexible! Then we look for skin signs, blood vessel signs (easy bruising, for example), and if possible, we compare everything with the rest of the family (or whatever family we can).
Dr. Francomano (THE geneticist in Baltimore with EDS) suggested I put up some videos, so I try to talk people through it at Prettyill dot com. There's one that covers all 6 types, then 3 separate ones for the most common 3 types. Please take a look! A geneticist who specializes in connective tissue disorders (there's about 3 of them!) are the best ones to diagnose it.
When my IR said that having EDS should preclude me from having angioplasty, I explained to him that 90% of us are never diagnosed, and with the overlap to M.S., there's a good chance he has already performed angioplasty on an EDS patient! (I love my IR, BTW -- there's a funny video about him on my "Did angioplasy hurt?" video. I reassured him that I didn't have the vascular form, and he did it! And did it again for my 13 year old son!
It's something I'll bring out in my talk at the CCSVI conference, for sure!
Thanks for asking. I think this will start to get more attention soon. Dr. Sclafani is VERY interested in it (which is likely what got me in to the conference to speak! ha).
Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea