Tag: HEDS

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

Calling All Geneticists

Wow, who would have thunk it? Careful what you ask for –  you may get it: we seem to be raising enough collective awareness finally through regular and social media that more people are suspecting they may have Ehlers-Danlos Syndrome and seeking out a diagnosis finally, yay. I see increasing numbers of media stories, both

Dr. Diana’s New Book The Driscoll Theory® is Now Available!

So happy to share that the New Driscoll Theory is now available in time for Christmas! Get your copy now! Written by fellow patient and therapeutic optometrist Dr. Diana Driscoll, it addresses the latest research and understanding on what drives so many of our issues and conditions with Ehlers-Danlos Syndrome and POTS and MCAD. Yay

Of Christmas Ghosts and Spoons

I’m borrowing liberally from Charles Dickens’ A Christmas Carol for this post. This December 2014 I’m thrilled to find myself ever so slowly climbing back out of the hole I fell in when a metaphorical “bomb” went off in my life three years ago and I succumbed to my Ehlers-Danlos Syndrome onset cascade in early 2012 leaving me wheelchair bound

Solve for both X and Y

So you’ve finally gotten a diagnosis, and some validation (hopefully!) Now what do you do about it? Sadly, there’s no single remedy or path to recovery (at whatever level) for everyone sorry, due to the systemic nature and extremely wide variation in expression of the condition in each of us, and the myriad complicating comorbidities I keep mentioning. (For

Introduction to EDS for Fibromyalgia Patients

Update May 3, 2017: The old references to the BRIGHTON (with an “r”) Diagnostic Criteria in here were OBSOLETED by the brand new 2017 Ehlers-Danlos Syndromes nosology and diagnostic criteria, the first in 20 years! These were introduced March 15, 2017 by the international Ehlers-Danlos Society after several years of hard work pulling experts from

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” or symptomatic per the new EDS criteria. Thus, I will be re-writing this entire post to reflect this fact and