There’s a good chance you’ve heard how important “getting stronger” is for bendy people. And it’s true: bendy people have been shown to generate about 30% less muscular force (i.e. be 30% weaker) at baseline than their non-bendy counterparts. And yet, the bendy body relies even more heavily on muscular support than others, thanks to […]
There is exciting news for the recently reported 17% of hEDS patients and 14.7% of HSD patients who experience polycystic ovary syndrome, now renamed to polyendocrine metabolic ovarian syndrome. On May 12th, 2026, a new article was published in The Lancet announcing the name change from polycystic ovary syndrome (PCOS) to polyendocrine metabolic […]
“What if it causes anaphylaxis?” “What if it makes me sick?” “What if it doesn’t work?” “Once I take it I can’t undo it.” For most people, starting a new prescription is routine – pick it up, get generic instructions from the pharmacist, take it, then report back to your doctor in a few […]
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 […]
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 […]
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 […]
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 […]