Tag: EDS

On Variable Expression

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

Diagnosing Ehlers-Danlos Syndrome

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

Down the EDS (and MCAD) rabbit hole…

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 yo…

Careful what you ask for, you may get it… The story of my life, literally! Stay tuned to find out why I say this.