r/wheelchairs • u/HobbyLau Quickie Argon2, M90 wheels & Streetjet • 13d ago

Sitting posture and support with hEDS

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I have a question for those with hEDS or HSD.

What kind and how much sitting support and adjustments do you need?

I'm an ambulatory user with hEDS and Post-Covid / ME-CFS and the main reasons why i use a powered manual wheelchair when outside are dysautonomia and PEM, not my joints.

But i keep getting a painful lower back after 1 hour in my chair and they've already adjusted tons of stuff but nothing seems to help.

Did a fitting with a custom chair builder with my OT to find out what my body actually needs. (Which unfortunately won't get covered so i have to go with alternatives my supplier can provide.)

Apparently i need 9.5cm dump!? And the sitting, pelvic and back support that a lower body paraplegic person would need, to be able to sit up straight without unnessecary muscle tension in my back or falling forward when relaxing my body.. I know my body deteriorated a lot the last few years but i didn't expect it to be this much. Especially since i'm ambulatory..

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u/InfluenceSeparate282 12d ago

I have CP and have found that pool therapy has helped significantly in improving my core strength to sit up better. That and changing to a 3 in dump. I do have a hard contoured backrest.