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 […]
This article explores whether upright MRI may be a useful tool for evaluating EDS-related spinal instability. Understanding the limitations of standard MRI and what positional imaging could offer instead, may help patients, clinicians, researchers, advocates, and healthcare providers better navigate the complex neurosurgical landscape of EDS. Why Supine MRI May Miss the Problem Cervical […]
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 […]
We wanted to end EDS Awareness Month by spotlighting the lived experiences of four individuals with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). Through these perspectives, we aimed to tackle a few of the many myths surrounding these conditions. We also wanted to offer a glimpse into the reality of living with EDS/HSD, including […]
We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]
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 […]
A new study, led by Dr. Cortney Gensemer, marks a genetic breakthrough in hEDS research. The KLK15 variant (p.Gly226Asp) has been identified as a direct disease-causing gene in hypermobile EDS, causing connective tissue dysfunction and immune system dysregulation.
Welcome back to Research Round-Up. This time, we’re looking at research that focuses on Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the young ‘uns, from birth to age 18. While some of the effects of EDS can be the same on adults as on the little ones, sometimes, the kiddos have more to […]
Ehlers-Danlos Syndrome May Increase Susceptibility to Infections
EDS, POTS and MCAS Linked by One Gene Mutation
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”