Tag: diagnosis

Denial is not a river in Egypt

I’ve found myself saying this phrase a lot throughout my life. I first learned it in recovery circles – Adult Children of Alcoholics as a teenager, initially. Followed by Codependents Anonymous later. And more recently I’ve been saying it in regard to the medical world’s inability to see and diagnose Ehlers-Danlos Syndrome when it’s staring them

Appearances are deceiving

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”

May is EDS Awareness Month

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

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

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.