Is there anyone who has been turned away from a doctor when they find out that you have EDS? I have had doctors tell me that I need to start seeing a specialist but then they are not sure who to refer me to and tell me that I need to find my own doctor who specializes with EDS. This is the most frustrating thing. not only will they no longer treat me but they can’t even help me find someone who can. Is there somewhere to search for doctors in my area who know about EDS?