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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Run Away, Netflix’s latest Harlan Coben adaptation, has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user. Run Away is a dark thriller/drama about Simon Greene, who is searching for his daughter Paige. With […]
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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”