Seems there are some common associated conditions?? located near the collagen gene locus that’s affected??? or just correlation doesn’t equal causation??? I suspect there is a genetic problem with CYP6D2 (that’s for memory… ha ha… not so good at pres)the metabolism of some substances affected and adverse/strange drug reactions. It’s so very complex and we dont have any concrete research looking at the whole person with EDS. We are victims of sub-specialists who can only focus on one system… may be a gross generalization, but how I’m feeling (I have a dream… every capital has a center for connective tissue disorders, where the medics can spell Ehlers Danlos and know more about it than me!!! Lucky I like puzzles!!)
All the best with finding a good doctor. I’ve just found the most wonderful GP/PCP who is just amazing. Gives me hope. Hope you are all OK. Bee (::)