Hi Wastedtalent, I think we all have climbed a similar mountain. I’m not sure where you live? Perhaps we could help to steer you toward someone if we knew approximately where you were located? Did you check yourself with the Beighton scale? (you can google to test, or I have a couple of videos out about the different types of EDS that explain this scale). Although it was a battle for us, some people sail right through to the right people!
The “right people” can be anyone from a shoe-salesman, eye doctor (ahem) to a orthopedist. They just have to have some familiarity… And an open-mind! Let us know? 😉