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roberri's Post
roberri
9mo ago
Looking for Hypermobility Support and Communities
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?
Your answer
Wanderinglumos
9mo ago
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
9mo ago
thank you so much!!
Wanderinglumos
9mo ago
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!
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