Managing Ehlers-Danlos
Jen Kain about her new EDS doc “Exhausted Existence”
Chronic Pain Partners’ Karina Sturm spoke with Jen Kain, the filmmaker behind “Exhausted Existence”. Kain’s documentary delves into the world of Ehlers-Danlos syndrome (EDS) and the lived experiences of those affected by it. In this interview, Kain shares insights into the creative process behind “Exhausted Existence”, the challenges faced during its production, and how the […]
Film Review: “Exhausted Existence – An EDS Story”
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 […]
The World Premiere of Complicated: The Film That Named Itself!
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 […]
New Pain Killer on the Market: Suzetrigine
Summary The medicine is sold as Journavx, with the chemical name Suzetrigine. It works by blocking NaV1.8 channels, which are responsible for pain transmission along nerves. It only affects peripheral nerves (outside the brain and spinal cord), such as those in the arms and legs. It does not cause addiction. However, Journavx is weaker than […]
Neurodivergence and Hypermobility: The Autism-EDS Connection
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 […]
Hypermobile and Hypersensitive? Understanding Sensory Processing Today
Sensitivity in the Spotlight and Why Labels Matter More Than Ever In today’s politically charged climate, the act of labeling—whether as a diagnosis, identity, or personality trait—has become a battleground. With the current administration rolling back Diversity, Equity, and Inclusion (DEI) initiatives, discussions around neurodiversity, sensitivity, and individuality are under scrutiny. But what happens when […]
Exhausted Existence – A New Documentary on Living with EDS
For many living with Ehlers-Danlos syndrome (EDS), the road to diagnosis is long, exhausting, and often isolating. The upcoming documentary “Exhausted Existence – An EDS Story (2024)” aims to change that. This powerful film brings to light the struggles of those with EDS, the failures of the medical system, and the urgent need for greater […]
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results published in early 2025 recaps the highlights. The new report, The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022 […]
