Oh TWIST

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

CW: Discussion of bullying, childhood emotional abuse, neglect and the larger charities and voices promoting prevention and fear of autism and curebie culture. June, 2022: I originally intended to get this out during April 2022, for Autism Acceptance Month, but alas, life conspired to delay me again. Good news – I dodged what we thought

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.

ETA: Yay, we got it working again October 4, 2021, just as Facebook proceeded to go out, lol. Sigh. Thanks Mercury! (It’s in retrograde, for thsoe who care about that kind of thing.) No idea exactly what the problem was, but guessing updating my theme helped. Onward…. ~~~~~~~~~~~~~~~~~Original Post 9/30/21 pm: Having temporary technical difficulties

Or why I think hypermobility is a misleading sign… March 2021 We interrupted our regularly scheduled blogging to bring you a… pandemic. And now we resume… I had a flash of insight upon watching a video of a talk by Jane Simmonds in 2017 (around the 20:30 mark). I’ve been struggling with the word “spectrum”

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.

Edited to add in January 2022: There is no longer a shortage of medical grade N95 masks in the US as we had at the start of this pandemic in 2020 (see next), but, sadly many are reticent (hesitant) to wear them still. Also, KN95’s and K94s are 95 and 94% effective, whence their names.

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