I finally have an appt with a biochemical geneticist by me who does personalized medicine for folks with connective tissues and mitochondrial stuff. Basically, I’d ensure you have a firm diagnosis, then from there it’s just hopping around to different specialists for the assorted problems you have as a result of the EDS. I am lucky to have this specialist in my city who I can then use as a doctor who will “manage” my case for me. I haven’t been able to find a sort of GP/point person thus far and have been doing all of that myself.

I know a lot of resources, what state do you live in ? They’re good doctors on the East Coast and a few on the West Coast. And like the above comment a good geneticist can meet with you, sometimes you have to pay out-of-pocket to speed up the process because Insurance won’t always cover it. I made an appointment with Dr Atwal, he’s out of Florida but he does virtual medicine and he gave me a lot of referrals and good direction to go in.

Yes, my geneticist is Dr Fran Kendall and does virtual as well. The wait for the appt is often 6-9 months, but if you return your records and paperwork early it’s usually moved up!

I live in Arizona, we have a Mayo Clinic super close to me but it’s almost a year wait to get in.

The good ones take about that amount of time on average, better to make the appts ahead of time and then if you find an earlier alternative, so be it. Otherwise next thing you know months have gone by and you haven’t found someone and could be that much closer.