Hi all, I’m sorry to say but due to both personal and national (US) changing circumstances, I’m feeling overwhelmed and unable to keep up managing my beloved Private OhTWIST support group on Facebook that we’ve run for over ten years. I WILL keep my Public OhTWIST Facebook PAGE going with the latest news as best
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
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”
Anyone with any flavor of a connective tissue disorder, and any flavor of Mast Cell Activation Disease can tell you how little restful sleep you can get. People with either an HSD or a form of EDS struggle mightily to sleep at all sometimes for a myriad of reasons I’ll share shortly. And I mean
Sorry for any recent confusion, but I’m still working out how to retain existing and capture new subscribers to my blog on my new platform since moving hosts late last month. (Same great content, just in a new, spiffier container!) I just put out a test blog post last week, and it appears no one
I just realized while talking to my friend recently that my blog was four years old this month, January 2018. How the time has flown! So I decided to wish myself Happy Blogging Birthday, and treat my site to a makeover. Yes, I’ve been radio silent here for a bit as I’ve been super busy
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Update February 7, 2017: Via The Ehlers-Danlos Society (aka “The EDS”) on Facebook the full new EDS nosology will be published on March 15, 2017. Meanwhile, some preliminary documents have been shared ahead of time, including one that talks about the new “framework” for recognizing and diagnosing the most common, hypermobile form of EDS. So,
