Oh TWIST

Catch "We Are Visible", a documentary about EDS online this Saturday, and other days in the future.

Can actually autistic people and their parents ever bridge the philosophical divide? Read on to find out...

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

Anyone with any flavor of a connective tissue disorder, and any flavor of Mast Cell Activation Disease can tell you how little restful sleep you can get. People with either an HSD or a form of EDS struggle mightily to sleep at all sometimes for a myriad of reasons I’ll share shortly. And I mean

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