Tag: HEDS

Slow your roll with me

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

Check Your Imposter Syndrome

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

Peeling the Diagnostic Onion

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

Beware of Gatekeeping

I’m doing a lot of warning lately, aren’t I? “Beware of Hammer Syndrome” last month. And now, “Beware of Gatekeeping” this month. Hey, it’s October 2018 as I’m hatching this post, so it sort of fits with the Halloween mood, right? (Beware of Ghosts! Boo!) Editors note: This post was first made available in early

Beware of Hammer Syndrome

Hammer syndrome? Wait a minute Jan – you’re already talking about Hypermobility Spectrum Disorders (HSD), multiple Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) among other things. You could say you’ve put the “syn” in syndromes, don’t you think? So what’s “Hammer Syndrome”?? Good news: it’s not a disease

Wherefor art thou Dysautonomia?

“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

What is Normal

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

Heads up change is coming May 2016

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,

The Chronic Constellation

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 February 25, 2023.) Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the