Category: About EDS

How sleep can actually sometimes be hazardous to your health if you have EDS or HSD

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

Lipedema is one of the most common comorbidities that is also one of the most often missed.

Perspective: for background, know that I’m a well educated, hyperverbal and hyperlexic white allocishet normative woman from the western US, with all the privilege that entails, despite my poverty. I just want to recognize that at the start of this post about my diagnostic journey. So many others have even fewer resources to work with,

My long time followers may have noticed that I update my home page every month under News and Events to talk about whichever comorbidity or comorbidities (plural, often) it is the awareness month for. E.g. September was both Chronic Pain and Chiari awareness month. Two much too common comorbidities for all of our liking, sigh.

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

EDS was hard to live with BEFORE COVID-19 arose. It's extra hard with it. Here are some tools to help cope.

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

Start thinking horses when encountering hypermobile patients... we may not be that rare!