I forgot that I only wrote about this over on Medium, where I started writing too a few years ago. I’ve made a whopping $0.87 there so far in oh, five years? Once again, not getting rich, not even meeting my needs, while others get more of the credit and glory. But I digress. Another
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
OMG, the autistic community is tired today. So tired. We thought we’d already managed to convince everyone that neither vaccines NOR Tylenol cause autism (they don’t, which is a fact, but some people will never be convinced), when President Trump and Health and Human Services Secretary RFK Jr both trotted out this old trope –
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
