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
This isn’t going to be a post on how specifically to diagnose the Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorders (HSD) per se, as that’s already been covered here. Rather, I want to draw attention to the many “red herrings” or false leads that we and our doctors often identify and manage to recognize and
This post is apt to be fraught with emotional triggers and landmines due to the nature of the subject itself. Weight loss and management have been a sore point for millions of people for many years, especially in the post war era in the so-called “first world” when big oil and the chemical industry radically
I’m writing this post ahead of what is likely to be a day of great change for many if not all in the greater Ehlers-Danlos community, if not the world (whether they all know it or not, smile). It is Monday March 13, 2017 as I type this, and we are all waiting on tenterhooks
“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
I know, “what is normal” is a really loaded question or statement, but I’m not intending it to be. My normal is not yours, nor theirs, nor anyone else’s. We all truly have our own “normal”. I’m just trying to help distinguish between the majority who are not hypermobile, and those of us who are, but
As many of you know, we’re unfortunately finding Mast Cell Activation Diseases aka “MCAD” of all kinds (forms of masto or the newly recognized MCAS and even newer HaTS since 2016) to be relatively common in Ehlers-Danlos patients, which is why I’ve written about them at length. I’m so grateful to Patricia Murray-Wood for following
I know, you came here originally to learn about a connective tissue disorder called Ehlers-Danlos Syndrome. I originally came here to write about a connective tissue disorder called Ehlers-Danlos Syndrome after experiencing a massive onset “cascade” or storm of symptoms that got me diagnosed finally at 45 in 2012. But like Alice down the rabbit hole encountering
2017 editor’s note: I wrote this post in early 2016 a year before the new EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated. E.g. the Brighton (with an “r” to be clear) Diagnostic Criteria are now obsolete, but the Beighton 9 pt scale
