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I was diagnosed with hEDS as a teenager but my parents didn’t keep track of any of my medical records. As an adult I’ve moved and am trying to seek out a diagnoses again so I can receive work accommodations but all my efforts have failed. My highest bet was a rheumatologist but they said they “don’t do that kind of testing”. I didn’t know how lucky I was to have good doctors as a teenager and now I feel completely lost.

    • goblin49


      I understand how hard it can be! Depending on how long ago it was, the diagnostic criteria may have changed for hEDS since you got diagnosed. I would check out the EDS society website to make sure you still meet the criteria (it was updated as of 2017). Regardless, i would push for seeing a geneticist. I knew based on the hEDS clinical criteria sheet that I met the requirements, but I couldn't get anyone (including 3 rheumatologists) to listen to me. Hopefully, if you know you meet the criteria, you could even bring it to a PCP or another doctor to get the referral as opposed to going through rheumatology.

    • Alyss


      Genetic testing is required for determining types of eds, but your rheumatologist should be willing to at least diagnose hypermobility spectrum disorder, which should cover most of the same accommodations. That said, you may need to see a geneticist to get a formal eds diagnosis. That's what I needed to do. If you have other comorbidities like POTS or other autonomic disorders, you can try to find the specific department that deals with that organ system to help. A friend with pots is regulated by a cardiologist, and mine is by a neurologist. Sorry you're having trouble finding someone to help you.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Based on the experiences shared, it seems that finding a doctor who is familiar with hEDS can be challenging. Some people have found success with geneticists or rheumatologists who are aware of EDS. Others have suggested seeking out local support groups for EDS, as they may be able to recommend knowledgeable doctors. It's also mentioned that genetic testing might not be helpful for diagnosing hEDS specifically, as the genetic markers for this subset of EDS are not yet known. Persistence in seeking out new doctors until you find one who listens and understands your condition is often necessary.

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