#okapistrong#Repost @perpetual.reflections ・・・ I no longer support the ehlers danlos society. A fe

#okapistrong #Repost @perpetual.reflections ・・・ I no longer support the ehlers danlos society. A few reasons are featured in these images from @hell.on.wheelsxx and @livs.journal but more info is in @hell.on.wheelsxx ’s blog post which I’ve linked in my bio!!! This is only the tip of the iceberg. They tightened criteria for HEDS without proper research and left a large group of patients with major life altering symptome and no diagnosis. They don’t do much to advocate for the lesser known forms of EDS other than HEDS and CEDS They endorse phsyicians as “experts” who openly call eds A PSYCHOGENIC DISORDER. And so, so much more. Their expensive studies paid for by donations are NOT going to actually benefit the community and do nothing to improve our quality of life. This is reminiscent of autism speaks and as we #wearredinstead for autism, i will not be supporting the ehlers danlos society. . I’ll post more info as it comes to me. . . . #ehlersdanlossyndrome #hsd #hypermobilitysyndrome #heds #hypermobileehlersdanlossyndrome #eds #ehlersdanlos #ehlersdanlossociety #vasculareds #chronicillness #chronicallyill #spoonie https://www.instagram.com/p/B40EkGUJMSw/?igshid=109rqztr7tdbs -- source link

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