News broken September 11, 2024: Potential biomarker found that may allow for easier diagnosis of hEDS and HSD per The Ehlers-Danlos Society. (Me Jan: hold your zebras folks – this result still needs to be CONFIRMED, and then reproduced and then made commercially available, but it portends the possibility sooner than later, yes! Exciting!) I
I just hatched a quick and dirty diagnostic flowchart last night that I shared on both social media, and on my Diagnosing EDS and HSD page to help everyone do a better job of ruling out all the things before diagnosing a form of Hypermobility Spectrum Disorders. Which is a diagnosis of exclusion of everything
Caveat: the following does not constitute medical advice, but merely education and illustration of one case. Talk to your doctors and other practitioners before starting or stopping any medical therapies, whether prescribed or over the counter. While there is no cure for the Ehlers-Danlos syndromes and the newly invented Hypermobility Spectrum Disorders (since 2017) yet,
I had absolutely NO idea when I fell down the Ehlers-Danlos Syndromes rabbit-hole back in 2012 suddenly landing in a wheelchair that I would end up falling down several other massively long rabbit-holes with yet other rabbit-holes attached, ack! Much less that I would stop walking for a year, and end up using crutches and
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
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
