hEDS

[GemDGemz]

Hey fellow warriors, Im new here and wondered if theres anyone has the same condition, Ehlers danlose syndrome and hypermobility (hEDS) If so, Id love to chat! I also have a few others but I won't bore u with that for now lol! Thanks for reading x

Not officially but I class myself as having it. Struggled to get a formal diagnosis but after my last knee dislocation, the orthopaedic surgeon said there is no way I don’t have hEDS with all the various other things I have on top.

How did you get diagnosis btw?

I dont kno how to reply to u directly @SMM2020hope u see this. Thanks for replying, aw bless ya. It was actually my physiotherapist that recognised the signs coz she herself had it, so she spent time to listen and look through my medical history and made the connection. She called my GP who was next door, she came in and asked her to do a urgent referal to Rheumatology which she did. I got my appt 3 months later (after 20yrs back and forth to Drs) and got my diagnoses there and then. I hope u manage to get a DR that listens, its such a long draining journey. Hugs x

I believe I have it but my drs are absolutely useless.

I have it and am also recently diagnosed, late last year. I suspect my son has it too but the private rheumatologist I saw to get a diagnosis doesn't see under 18s and he's 11. I'm waiting on bloods to rule out vEDS as there's a strong history of heart valve problems and aortic anuyrism in my family, I feel like I might have to go privately for that too if the NHS can't offer it. Very happy to chat, I am learning something new every day it seems at the moment!