I got super lucky with my diagnosis because I didn’t even really have to advocate for myself or see many doctors, I just had a few internal referrals to get to my hospital’s connective tissue clinic. They must know me better than I know myself because I’m not so confident I met criteria for hEDS over HSD. I’m seeing fewer new providers now but tbh I don’t think it’s been helpful to have the diagnosis yet, except maybe for hand therapy which measured my rom for themselves anyways.

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i was in the process of seeing the geneticist when my insurance changed so now i have to start all over :( i have “suspected heds” in my chart tho

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