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
EDS was hard to live with BEFORE COVID-19 arose. It's extra hard with it. Here are some tools to help cope.
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
Start thinking horses when encountering hypermobile patients... we may not be that rare!
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
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
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
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
Hammer syndrome? Wait a minute Jan – you’re already talking about Hypermobility Spectrum Disorders (HSD), multiple Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) among other things. You could say you’ve put the “syn” in syndromes, don’t you think? So what’s “Hammer Syndrome”?? Good news: it’s not a disease
April is widely known as “Autism Awareness Month“. However, since following several actually autistic writers and bloggers on Twitter and elsewhere, I’ve come to understand how even calling it that may be “ableist”. (Google the hashtags #ActuallyAutistic and #RedInstead for some samples.) How is that you well ask? What is ableism? Great question! And why