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

Beware of Hammer Syndrome

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

Sleep and EDS and MCAD

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

Ableism Awareness Month

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

Housekeeping February 2018

Sorry for any recent confusion, but I’m still working out how to retain existing and capture new subscribers to my blog on my new platform since moving hosts late last month. (Same great content, just in a new, spiffier container!) I just put out a test blog post last week, and it appears no one

Weight and EDS and MCAD

This post is apt to be fraught with emotional triggers and landmines due to the nature of the subject itself. Weight loss and management have been a sore point for millions of people for many years, especially in the post war era in the so-called “first world” when big oil and the chemical industry radically

Happy Birthday Oh TWIST!

I just realized while talking to my friend recently that my blog was four years old this month, January 2018. How the time has flown! So I decided to wish myself Happy Blogging Birthday, and treat my site to a makeover. Yes, I’ve been radio silent here for a bit as I’ve been super busy

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Seeking Zebras of Color

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly women. Or at least that I’m aware