Living with Ehlers-Danlos syndrome (EDS) means navigating a medical system that is often unable to recognize, diagnose, and appropriately treat the condition. The documentary “Exhausted Existence – An EDS Story” (2024) by Jen Kain sheds light on these challenges. Through personal narratives, the film emphasizes both the struggles and the resilience of the community and […]
It took nine years to get to that Red Carpet. In late February, our documentary film, Complicated, premiered at the prestigious Slam Dance Film Festival in Los Angeles. The film is a call to action, an expose of some of the darker challenges that young people and their families living with complex symptoms of Ehlers-Danlos […]
Chronic Pain Partners introduced the topic of neurodivergence and Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndrome (EDS) in our first newsletter this year (January 2025), but autism has been shown to co-occur with EDS for many years, with an early published case dating back as far as 1993 and another in 2011. Neurodivergence comprises a […]
One-liner: A family’s journey of finding their identity on the intersection of disability and queerness. Synopsis: Much More Than That is a 15-minute short film that delves into the lives of the Pollock family, who share deep connections that transcend their heritage. Jack and his mother Maria both live with Ehlers-Danlos syndrome, a rare and […]
Yes, it’s time to get ready for travel, dietary changes, and potential overwhelm. But we’re here to help you keep the peace!The holiday season can bring joy, but it also tends to come with stress, pressure, and endless obligations that can wear us down. For those of us with Ehlers-Danlos Syndrome (EDS), this time of […]
TW: If you feel dismissed by loved ones, or struggle especially from family of origin issues related to your invisible illness, this post can be triggering. As I navigate the choppy waters of my chronic invisible illness, I’ve come to a heart-wrenching realization: my family dynamic, instead of being my safe haven, is a downward […]
Why Use Technology in HealthMany of us wish there was an ‘all-in-one’ app ideal app to help manage Ehlers-Danlos syndrome (EDS) so patients and their caregivers could have an easier time managing health data, symptoms, doctors, medical records and more. Everyone knows healthcare is going digital, and Artificial Intelligence (AI) is likely to change the […]
September is Pain Awareness Month—a time to shine a light on the silent journey of so many chronic pain sufferers. The unwavering type of pain that lasts for longer than six months called “chronic pain” can seem endless when you have Ehlers Danlos syndrome (EDS). It is likely the most common symptom so many of […]
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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”