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 Phew! Crazy times we’re living in. I intended to write this post almost two years ago now. Then, I got a pandemic for my birthday in March 2020. And a second and final (I hope!) move within my preferred apartment building to the top
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
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.
TW: CW: discussion of gaslighting and abuse and medical PTSD We rolled out an entire new classification and diagnostic scheme for all of the 13 forms of the Ehlers-Danlos syndromes, as well as a brand new category for those who aren’t quite bendy enough called Hypermobility Spectrum Disorders almost two years ago now, in March