I haven't yet gotten an official diagnosis but when I needed surgery for shoulder dislocation and repair the surgeon said he's confident I have EDS and wants me to take the next step. While I work on getting insurance, I've been doing me research on the topic.

After reading about it online and reading other people's stories about having EDS I'm nervous about actually receiving a diagnosis. In the past I've brought up to my Drs about joint pain, back, and that my knee consistently dislocates but they keep telling me they don't see anything wrong. I've never hotten a genetic test done and I'm scared to bc I'm afraid to be gaslit again.

I know I'm all over the place here, I guess I'm asking how advise on how to deal with the anxiety of actually getting tested and advise on how to help with being gaslit by Drs?

Ehlers-Danlos Syndrome (EDS)

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  • Tinkerbell82


    In my experience it is extremely difficult. Ask your PCP to refer you to a geneticist. Some you don’t even need a referral. It’s a long and exhausting road and it’s normal to feel defeated unfortunately. Find a support group as well. I hope this helps at least some 💕

  • Heaven197987


    I did my "party tricks" for my Nero doctor I don't know which type I have insurance don't cover a genetic doctor

  • ZebracornV


    I found a support group after hEDS was brought up as a possibility but before diagnosis and it made everything a lot easier. People in the group understood my apprehensions and were also able to tell me who the specialists in our state are and which geneticist to go to. I was so nervous about the same things as you, especially since hypermobile EDS has no genetic marker, I was afraid I would have to “convince” her there was something wrong. After she took two hours with me, she saw far more indicators of hEDS then I even saw. So long story short… find other EDS zebras in your area bc their experience and knowledge is invaluable!

  • Heaven197987


    I have had the same issues my insurance wouldn't cover it years ago I haven't checked to see if that's changed I think it's important to know which type of not so much for me but for my kids and grandkid

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