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roberri

256d

hi, so i recently got diagnosed with hypermobility by a physiatrist; they also have referred me to a geneticist to see if i have ehlers danlos syndrome; it’s great news to be a step ahead with my treatment, but at the same time i can’t help but feel a little lost as to where to go from here. id like more support in understanding this part of my condition. is anyone aware of any communities/support groups for hypermobility?

Top reply
    • roberri

      254d

      @Wanderinglumos thank you so much!!

    • Wanderinglumos

      256d

      Facebook typically has some groups. There’s a general Ehlers danlos one and there are typically ones more relevant to your area too for local support finding doctors and stuff. Ehlers-danlos.com also has some good resources that might help. There is also a subreddit for ehlers danlos/hyper mobility that can be helpful to learn more when first being diagnosed but be aware it’s just people’s opinions and experiences and it’s not doctor advice. I find some online groups or subs can be toxic so follow your own judgements there.

      • roberri

        254d

        @Wanderinglumos thank you so much!!

      • Wanderinglumos

        256d

        @Wanderinglumos It might feel overwhelming, but you’re not alone! It takes a little while to settle into a new diagnosis and understand it, I’m still learning new things about hEDS every day, but I’m glad you’re getting answers!

☝ 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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