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
News broken September 11, 2024: Potential biomarkers 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
And HSD too. Always. Anytime I say EDS, I consider the forms of Hypermobility Spectrum Disorders (HSD) to automatically be included. Because, much like how Asperger’s got described and separated out of Autism Spectrum Disorders in the 1990’s (it has since been folded back in and the bar raised a bit since 2015 to be
And I have been quite remiss in not saying more about this over the years. No, really. Just because I happened to figure out and find all the many and varied causes of MY chronic fatigue, and feel I have “solved my case” so to speak*, this does not do justice to my millions of
Huh? What do you mean by that, Jan? Well… I’ll tell you. As my long time followers know, I slowly uncovered and recognized and diagnosed both my autism, and more a propos to this post: my ADHD recently in the summer of 2021 at 54. Finally, I had some additional answers for my mental and
What ever does Imposter Syndrome have to do with my connective tissue disorders and autism, Jan? Well… possibly a lot. First off, what is Imposter Syndrome? Well, at its heart, it’s a feeling that one doesn’t belong in a given community, or at the level they are operating in a given community. Whether as an
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
