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
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,
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
“Homeo(stasis)… oh homeo(stasis)… wherefor out thou dysautonomia?” to mangle a phrase with apologies to all you brilliant Shakespeare scholars. And mix some medical metaphors to boot. Anyone who’s been exploring either the Hypermobility Spectrum Disorders (including the forms of EDS) or the highly comorbid Mast Cell Activation Diseases (all forms of mastocytosis, but also the
Fasten your seatbelts and settle in with a snack (again), you’re in for a bit of a long ride, smile. I’ll try not to make it too bumpy! (Last updated September 8, 2024.) Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the
I really need to include anxiety in this post as well, as the two – depression and anxiety – seem to go very hand-in-hand for a large number of us. No surprise, this is true for the commonly comorbid autism spectrum as well, coincidentally. Maybe we’re finally onto some of the underlying organic causes of
I’m thrilled to share that my short “story of strength” was included in the first edition anthology of Our Stories of Strength: Living With Ehlers-Danlos Syndrome that came out on Kindle May 8th, 2015 for EDS Awareness Month! And as of June 1, it is now also in Print on Amazon too! It is co-edited
I’m slowly cooking up my own “Pain and EDS” post, but meanwhile, I felt this one by fellow blogger and sufferer Zyp Czyk worth sharing sooner than later.
