If only pain glowed, we could enlighten the world. – Jandroid 3.0
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” or symptomatic per the new EDS criteria. Thus, I will be re-writing this entire post to reflect this fact and
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
– the state achieved when one has hit one’s EDS wall and simply MUST go splat and take a nap! – Jandroid 3.0
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
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
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 may get it… The story of my life, literally! Stay tuned to find out why I say this.