Category: About EDS

Weight and EDS and MCAD

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

Seeking Zebras of Color

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 females. Or at least that I’m aware

Validate Yourself

It’s March 20th, 2017, and the new extremely complex and greatly updated Ehlers-Danlos syndromes nosology and diagnostic criteria haven’t even been out for a week, and yet it feels like a month has already passed, my brain is so blown by so much new information and the very emotional response that has erupted since! Lordy!

Handling Change

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

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. Well 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 may

Think marathon…

Think marathon… not sprint, when trying to diagnose and treat a connective tissue disorder. (Large doses of patience and persistence are in order at all times.) – Jandroid

Reframing autism and more

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

50,000 Shades of Grey

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EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated.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

Anxiety and EDS

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

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,