Thread by @badelastic, I think the term *Hypermobile* Ehlers-Danlos Syndrome is entirely inadequate & superficial [...]

Alissa🕸

badelastic

I think the term *Hypermobile* Ehlers-Danlos Syndrome is entirely inadequate & superficial & leading to widespread misunderstanding & mistreatment of patients. It paints a picture of a benign condition—someone who’s flexible. It’s awful. #eds #hEDS #EhlersDanlosSyndrome

From what we know, our collagen-containing tissue is genetically, irreparably corrupted. The result is tissue that is weak, unstable & lax—vulnerable to overstretching, tearing & collapse. ‘Hypermobility’ of a joint, is just one, superficial, visible result of this. #EDS #hEDS

The nature of this corrupted tissue in #hEDS leads to altered/dysfunctional biomechanics, which then puts unusual stress on the already unstable tissue, resulting in tears, subluxes, dislocation, strains, sprains, fractures, tendinitis, bursitis, arthritis, neuropathy(etc++) #EDS

And not only do we experience these ruptures, etc, but due to #hEDS corrupted tissue→dysfunctional biomechanics=we often don’t get them where/how a typical person does—nor at the same age. So doctors dismiss us. “That can’t be it. Only happens to pro boxers/to 80-yr-olds.” #EDS

Meanwhile, internally, this genetically corrupted tissue, lends to instability, overstretch or collapse in aspects of various systems—tubes don’t want to stay open—things that are supposed seal are loose. Is the term “hypermobile,” most descriptive/helpful? I’d say no. #hEDS #EDS

I want physicians to understand that our disability is not ‘hypermobility’. It is tissue instability. And that #hEDS tissue becomes weak/unstable in atypical patterns—yielding atypical problems. I get it—that’s not convenient, diagnostically. Imagine what it’s like for us. #EDS

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