EDS So White

So I tried to enlist zebras of color to share their stories of trying to get diagnosed with EDS/HSD three years ago in 2017. Because if you haven’t yet noticed, the EDS space is very white. And female. Mostly. Or at least what I’ve encountered so far is. (I’m in over 40 EDS related groups

Masking up against COVID-19

April 8, 2020 Jan Groh, author (I seriously started this in late March and it kept getting away from me! Written from the POV of the western US.) Phew! What a roller coaster ride it’s been! First it was – “no big deal, it’s not even here, and may not even come”, don’t mask up

Gaslighing Syndrome

TW: CW: discussion of gaslighting and abuse and medical PTSD We rolled out an entire new classification and diagnostic scheme for all of the 13 forms of the Ehlers-Danlos syndromes, as well as a brand new category for those who aren’t quite bendy enough called Hypermobility Spectrum Disorders almost two years ago now, in March

Happy Fifth Birthday Oh TWIST!

Lordy time flies you guys! I was just updating my WordPress theme and all my plugins tonight ahead of upgrading to Gutenberg when I realized I’ve been running this blog for five years now, wow! Happy Birthday to me! Both me and the blog have moved a couple of times since 2014 – hopefully fairly

Peeling the Diagnostic Onion

This isn’t going to be a post on how specifically to diagnose the Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorders (HSD) per se, as that’s already been covered here. Rather, I want to draw attention to the many “red herrings” or false leads that we and our doctors often identify and manage to recognize and

Beware of Gatekeeping

I’m doing a lot of warning lately, aren’t I? “Beware of Hammer Syndrome” last month. And now, “Beware of Gatekeeping” this month. Hey, it’s October 2018 as I’m hatching this post, so it sort of fits with the Halloween mood, right? (Beware of Ghosts! Boo!) Editors note: This post was first made available in early