For most of my life, other people told my story. As a teenager, I saw my story appear in newspaper articles, documentaries, and conference presentations, focused on my rare genetic condition, scientific discovery, and perseverance. The stories helped other families find answers and gave people hope, and I remain grateful for the community they created. […]
If you’ve ever coughed while eating, felt like food got stuck in your throat, or found yourself avoiding certain foods because they’re harder to swallow, you’re not alone. Many people with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) describe these experiences, yet swallowing problems are often overshadowed by other symptoms like joint pain or […]
Living with EDS often comes with navigating an ongoing cycle of injuries, fatigue, symptom flares, medical appointments, unexpected setbacks, and uncertainty about what your body will do next. For many people, EDS-related stressors are cumulative, where each new experience adds to an already heavy emotional burden. Over time, this constant state of stress and adaptation […]
Have you ever clicked on the webinar section of our Chronic Pain Partners website and looked through the archives of the presentations featured? In 2013, our founder, John Ferman, started this highly popular educational series with a clear mission to provide free access to emerging research interpreted by experienced physicians. Wow, did he succeed! Looking […]
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 […]
For many people living with hypermobile Ehlers-Danlos syndrome (hEDS), one of the most frustrating aspects of the condition is pain that feels impossible to explain — burning sensations, widespread sensitivity, symptoms that seem to involve the whole body rather than just the joints. Standard neurological tests often come back normal, leaving patients without answers […]
“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 […]
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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”