Tag: medical zebras

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EDS nosology and diagnostic criteria were presented in March 2017, so some of the diagnostic information below is now outdated.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

The Chronic Constellation

Fasten your seatbelts and settle in with a snack again, you’re in for another long ride, smile. (I’ll try not to make it too bumpy!) Hopefully you’ve heard of “The Trifecta” by now – that is, the relatively common trio of issues we find comorbid in the Ehlers-Danlos community of any form of EDS (or the newly

Depression and EDS and MCAD

I really need to include anxiety in this post as well, as the two – depression and anxiety – seem to go very hand-in-hand for a large number of us. No surprise, this is true for the commonly comorbid autism spectrum as well, coincidentally. Maybe we’re finally onto some of the underlying organic causes of

Our Stories of Strength coming out May 2015

I’m thrilled to share that my short “story of strength” was included in the first edition anthology of Our Stories of Strength: Living With Ehlers-Danlos Syndrome that came out on Kindle May 8th, 2015 for EDS Awareness Month! And as of June 1, it is now also in Print on Amazon too! It is co-edited

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”

But I’m a horse!

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

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