EDSociety: What You Need to Know
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 with 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 recent “EDNF impostor website” statement and then their ABSURD stance contesting the latest research on hEDS’ prevalence - based on their “opinion” and how they “feel” (which, btw, who’s the “we” there? Lara? The board? The medical team? Who weighed in? [update: they added a list of members behind the statement since this post, but little else explaining