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 conditionâsomeone whoâs flexible. Itâs awful. #eds #hEDS #EhlersDanlosSyndrome
From what we know, our collagen-containing tissue is genetically, irreparably corrupted. The result is tissue that is weak, unstable & laxâvulnerable to overstretching, tearing & collapse. âHypermobilityâ 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 tissueâdysfunctional biomechanics=we often donât get them where/how a typical person doesânor at the same age. So doctors dismiss us. âThat canât be it. Only happens to pro boxers/to 80-yr-olds.â #EDS
Meanwhile, internally, this genetically corrupted tissue, lends to instability, overstretch or collapse in aspects of various systemsâtubes donât want to stay openâthings that are supposed seal are loose. Is the term âhypermobile,â most descriptive/helpful? Iâd say no. #hEDS #EDS