what specialists have helped manage your conditions so far? and any advice on talking to doctors and self advocating

Ehlers-Danlos Syndrome (EDS)

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  • LeeannD


    Woah so this is hard for me to answer. I feel it's taken 20 years to find someone. My biggest advice is find a doctor you can talk to. If a doctor tells me to do something like take a med or change my diet, I want to know why and I want options. In college I had a doctor say because I said so. I listened. Got the meds. Then tossed when I got home. Never went back to her and decided I wasn't going back. I've had specialists help but my primary care NP is the best! I go to specialists when she needs help. She helps me formulate questions to ask. I write down. She helps me explore my options and doesn't tell me I have to do anything. A doctor that understands YOU are in charge of your health, is the best. I have seen a wide variety of specialists but no one I see regularly now

  • SaltyWater


    I have found that working with an ortheostatic musculoskeletal physician really helps me as well as my primary joint doctor who is a specialist in EDS and has it herself. Hope you can find a good medical fit for you soon!

  • Ornith


    I see a neurologist and a pain management specialist for my POTS/EDS. The best advice I can give you is to look for someone who is familiar with your illness(es). Trying to get treatment out of a doctor who doesn't know the nuances of EDS is much more difficult than getting treatment from one who does

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