How do you find good doctors who are knowledgeable about EDS?
Ehlers-Danlos Syndrome (EDS)
I’d love an answer to this too… literally when I was diagnosed by a team of 4 geneticists they told me, “yep you have EDS, we can’t really do anything for you though. Call us in a few years if the science changes.” And I’m like….. b!txh what?! Thanks for nothing
I went to Cooks hospital for children in Dallas. Honestly we got lucky with the great docs there. I had a pretty good physical therapist for a lil while i there i was the only one there that wasn’t 55 or older lol i felt old on the inside tho still do. Id say look around at the local docs in ur surrounding area and ask patients or former patients how they are/were
You often have to educate doctors. 1 paragraph in 1 class is about all they get. Facebook has a lot of groups that are state/area specific and have lists of good doctors to go to.
Go to the Ehlers Danlos Society online. There is a page that lists knowledgeable doctors by state.
my experience was always very hit or miss. i would 100% talk to other people with EDS about it. I went to some of the best hospitals in the US only for their rheumatologists to scratch their heads and send me on my way. i got very lucky to find one who was only an hour away.
Idk if this is common, but it seems like there’s hidden pockets of people who know what they’re doing. Facebook groups are pretty good, but make sure to look into their training, and experience, because a lot of them go on a list because someone went there once and got treated. That can be good if that’s all you have access to, but you will have to be the doctor as well as the patient. And there can be a lot of gaslighting that happens there too. If it’s mentioned that they trained with a well-known EDS doctor/researcher, or that they or their family has Eds themselves then they’re more likely to be a good one. They can be hidden though, so you have to just keep digging. I wish you luck <3
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