April is widely known as “Autism Awareness Month“. However, since following several actually autistic writers and bloggers on Twitter and elsewhere, I’ve come to understand how even calling it that may be “ableist”. (Google the hashtags #ActuallyAutistic and #RedInstead for some samples.) How is that you well ask? What is ableism? Great question! And why
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 don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly women. Or at least that I’m aware
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
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EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated.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
I’m writing this post while listening to the replay of The Anxiety Summit produced by Food and Mood Gal Trudy Scott this week (June 16, 2016). And I am not surprised to find myself falling down yet another rabbit-hole, with yet more rabbit-holes attached! (Are you?) And unfortunately, I must say I’m finding anxiety, whether
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,
