When I discovered I have Ehlers Danlos Syndrome, I felt very alone. After much discussion, and looking at resources that were already available, I realized that finding support you can access in person isn’t easy. I’m always needing suggestions for local resources, but I am fortunate enough to live in one of the few areas of the US that has a long-standing EDS support group meeting once per month.
If you have EDS and you’re trying to find someone to talk to who REALLY understands, check out the Ehlers Danlos Syndrome International Registry. There are so many zebras there! Maybe you’ll find a local friend.