#Repost @hell.on.wheelsxx ・・・ Over the past few months, several Ehlers Danlos advocates have been di

#Repost @hell.on.wheelsxx ・・・ Over the past few months, several Ehlers Danlos advocates have been discovering a multitude of concerning, disappointing, scary or just downright odd things about the EDSociety. We have had a ton of dialogue with them as both an org and as CEO/president Lara Bloom on Twitter and FB, but it has provided no clarity, only escalation. Instagram, however, has remained mostly unaware — completely in the dark. Thanks to the platform not being conducive to layered conversation or sharing links, screenshots, studies, tweets and more, IG stayed in a blissful bubble. That was never more evident than witnessing the support on both their “EDNF impostor website” statement and then their ABSURD stance contesting the latest research on hEDS’ prevalence via their “opinion” and how they “feel” (which, btw, who’s the “we” there? Lara? The board? The medical team? Who weighed in?). You deserve to know everything and WE deserve better. . That said, it is really difficult to get you all up to speed when I can’t link countless tweets, angry responses, lies, cleverly-worded and extremely evasive answers to questions, screenshots of studies, and more. The amount of text is also SO long and inaccessible for an IG post. I decided to upload this to a separate blog page to be more legible; that link will be in my bio for a bit. I’ll do my best to consolidate this primer, but cannot urge you enough to go to Twitter yourself, look into threads by advocates Asher Wolf, Karrie Higgins, Allison Wallis, Liz (Liminal Nest), Linda_T, myself and so, so many more. . To start, they promote, work with, follow and/or endorse a wide variety of extremely damaging folks/ideologies: Dr. Bulbena - endorsed by EDSociety - refers to EDS as an “anxiety-collagen disorder”, one of psychogenic origin. Yes, that means caused by our mental health. Yet, EDSociety’s own hEDS expert (Dr. Rodney Grahame) vehemently contests this and came forth sharing a variety of flaws with Bulbena’s conclusions.. Please check out @hell.on.wheelsxx excellent post for more. https://www.instagram.com/p/B4ixkXCJwji/?igshid=1gjg8ifwinpnb -- source link
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