Being diagnosed with Ehlers-Danlos syndrome can feel like a major feat to some. Maybe you’ve been advocating for a diagnosis for a while, or maybe this was a shock to you. In both scenarios, sometimes you get to the other side of the diagnostic process and realize it doesn’t just stop there. Now is the […]
Hypermobile Ehlers-Danlos syndrome (hEDS), and the closely related hypermobility spectrum disorders (HSD), are commonly thought of as conditions that primarily affect women. Walk into any EDS support group, online community, or clinic waiting room, and the overwhelming majority of people there will be female. But does that mean men are truly less affected, or does […]
As a mother of three children living with Ehlers-Danlos syndrome, the start of a new school year has always brought a certain amount of anxiety. While many of my mom friends and their kids were shopping for new clothes and school supplies, excited about the possibilities of a fresh start, my back-to-school “to-do” list often […]
If you’ve landed here, maybe you have been quietly researching traits of autism, looking up screening questionnaires, and wondering if you could be part of the recently reported 39% of autistic patients that have co-occurring Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). Before I ever sat across from an evaluator, I spent months reading, […]
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 […]
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 […]
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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”