Appearances are deceiving. Everyone has undoubtedly experienced some form of misunderstading, bias or disrespect from some form of misjudgement based on our appearance, sick or not. (Racism, sexism, agism). But the appearances of those with any form of Ehlers-Danlos Syndrome are especially deceiving, as the majority with it show no visible outward signs of illness at all. Every EDSer (aka “zebra”
Category: About EDS
Update May 1, 2017: This post was originally written in 2014, before the brand new category of Hypermobility Spectrum Disorders was introduced by The Ehlers-Danlos Society in March 2017 for those who are “less bendy”. Thus, I will either be deleting or re-writing this entire post to reflect this fact. I will also no longer
Every chronic illness and issue has an awareness month, and May happens to be the month for Ehlers-Danlos Syndromes Awareness. So prepare to be beat about the ears and eyes with lots of awareness tweets, pins and Facebook posts by your afflicted friends or family. However, THIS year (I’m updating this in April 2017 after
Okay, at the risk of sounding like a simple ranter, I’m dropping in a quick cautionary post to urge ALL who are hypermobile (whether you have a Hypermobility Spectrum Disorder or EDS or not, diagnosed or not) to AVOID all anti-biotics from the fluoroquinolone or “quin” family but especially “Cipro”. Heck, I’ll change that to
From the online Genetics Home Reference, variable expression is defined as: “Variation in clinical features (type and severity) of a genetic disorder between individuals with the same gene alteration, even within the same family” [italics mine, JG] Definition from: GeneReviews from the University of Washington and the National Center for Biotechnology Information Take the trait for
Just a quick blog “housekeeping” notice for my new followers (all 2 of you!) that I’m going to be re-arranging my “fruitbasket” a.k.a. my existing posts and pages a little bit, as everyone (including me!) agrees they’re a bit lengthy for the average reader, and might be more digestible in shorter chunks. I was just so eager to get all this
Boy is this a hot topic! Naturally, since it’s so hard to even get a doctor or doctors to listen to us and recognize our vast collections of symptoms (see last) as a possible systemic condition, we naturally want an easy test to take and be done with this painful journey and have an answer. (Our
I’ll repeat that if you haven’t yet read my About EDS post, please do so now to help make this post more understandable. It is seriously hard to do this topic justice in just one blog post. (Why I’m trying hard to write more off line, smile). Remember the six blind men and the elephant story?
Alice in Wonderland doesn’t hold a candle to me – or anyone else with Ehlers-Danlos Syndome of any kind, I’d say. As long, winding and mind-bending as her journey down her rabbit-hole seemed, the journey of an EDS patient has an unending supply of twists and turns that would make even the Cheshire Cat blush.
Careful what you ask for, you just may get it. I struggled through my youth, young adulthood, and even into middle age to keep up, much less “make it”, and to be heard. When suddenly the Universe handed me an oversized microphone in the form of a visible disability that now makes it hard to