If you’ve landed here, maybe you have been quietly researching traits of autism, looking up screening questionnaires, and wondering if you could be part of the recently reported 39% of autistic patients that have co-occurring Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). Before I ever sat across from an evaluator, I spent months reading, […]
There’s a particular kind of exhaustion that has nothing to do with the joint pain, dysautonomia flares, or GI symptoms. It has everything to do with how you’re expected to present those things to other people, specifically your healthy, able-bodied friends or coworkers or strangers on the street. If you have Ehlers-Danlos syndrome (EDS) or […]
This month, we spoke with Amy Wang-Hiller, a violinist living with quadriplegia, hypermobile Ehlers-Danlos syndrome (hEDS), and related complex neuro-connective tissue conditions. As a violin instructor, Amy works with intermediate and advanced musicians navigating changes that affect performance, such as complex neurological disorders. She is also a disability advocate, founder of the InclusiVibe Foundation, and […]
Like many people, my hypermobile Ehlers-Danlos Syndrome (hEDS) was diagnosed after a steep and sudden decline in my health. I had been navigating fatigue, pain, and fogginess for years, but in April 2020, I became bedbound for months following an incident during a Zoom call where I began blacking out and twitching. I had been […]
This month, we wanted to give you a peek into the daily lives of our team members by asking them to share a few of their favorite go-to supportive items for Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD). While these aids might be what work for us personally, we hope they offer inspiration and ideas to help you live your life to the fullest with EDS/HSD.
Previous editions of Research Round-up can be found at the following links: Edition 5 (Pediatrics) Edition 4 (Neurodivergence) Edition 3 Edition 2 Edition 1 Howdy, partners! This Research Round-up has roped in a whole herd of topics for you. We hope you enjoy the read, learn a thing or two, and feel […]
TW: If you feel dismissed by loved ones, or struggle especially from family of origin issues related to your invisible illness, this post can be triggering. As I navigate the choppy waters of my chronic invisible illness, I’ve come to a heart-wrenching realization: my family dynamic, instead of being my safe haven, is a downward […]
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Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”