Articles
New Study Finds Shared Protein Signatures in hEDS and HSD
A recent 2026 study is providing additional clues about the biology of hypermobility spectrum disorder (HSD) and hypermobile Ehlers Danlos Syndrome (hEDS). In this article, we’ll explore what the researchers discovered, why they believe the two conditions may share common biological mechanisms, and what these findings could mean for future research. How the Study Was […]
Things People Have Done That Made Me Feel More Comfortable as Someone with Chronic Illness
Chronic illness can be isolating in ways that are hard to articulate, even to the people who love you most. It’s not just the physical reality but also the guilt of canceling plans, the exhaustion of explaining yourself, and the fear that your illness is impacting your relationships. I have found great value in people […]
Disability Pride Month: The World Works Better With Us
Every July, the disability community marks Disability Pride Month: an annual celebration tied to the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. The ADA was a landmark civil rights law that prohibited discrimination against disabled people in employment, public accommodations, transportation, and government services. It was the result of […]
Seeing the Spine in Motion: Exploring the Potential Benefits of Upright MRI in EDS
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 […]
Why a Sun Umbrella May Deserve a Spot in Your Dysautonomia Toolkit This Summer
If you are among the many people with Ehlers-Danlos syndrome (EDS) who also have dysautonomia, summer can feel less like a season to enjoy and more like something to survive. Research suggests that dysautonomia affects approximately 80% of people with hypermobile EDS, making it one of the most common comorbidities associated with the condition. For […]
My Ostomy Saved My Life
Celebrating My Two-Year Stoma-Versary I used to feel like I couldn’t say, “my ostomy bag saved my life,” because I didn’t get my ostomy bag for the same reasons a lot of people do. Some of the most common reasons people need ostomies are for inflammatory bowel disease (IBD), acute infections like diverticulitis, or colon […]
What’s the Point of Pursuing EDS Diagnosis?
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 […]
College Accommodations for Ehlers-Danlos Syndrome
Going off to college is an exciting time, filled with new adventures and much more freedom, both personally and academically. However, it can also come with numerous challenges, particularly for students with Ehlers-Danlos Syndrome (EDS) and related conditions. On the positive side, increased independence means students with EDS may be able to manage some […]
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