Although I’m a bit behind updating my blog here, the EDS world has been abuzz since the introduction of what folks are describing as a new phenotype of EDS: Neuro-EDS. That is, a description of a collection of neurological issues involving the cranio-cervical junction, spine and more that seem to plague a notable number of
It’s easy for me to forget that not everyone has their ear to the ground about the latest news of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. So I realized I should probably hatch a quick post to catch folks up who aren’t following me on socials. (No judgment, in fact, I sort of envy
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
What ever does Imposter Syndrome have to do with my connective tissue disorders and autism, Jan? Well… possibly a lot. First off, what is Imposter Syndrome? Well, at its heart, it’s a feeling that one doesn’t belong in a given community, or at the level they are operating in a given community. Whether as an
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
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
