Finding medical support – whether that is from a doctor, a physical therapist or other experts – when living with Ehlers-Danlos syndrome and comorbid conditions is incredibly challenging. Often, patients have to manage their care alone, coordinating appointments and communications between 10 – 15 specialties while paying six figure medical bills and trying to cope […]
If you are a parent who is trying to get your child evaluated for Ehlers-Danlos Syndrome, you may have already discovered that it is often not a straightforward process. The Ehlers Danlos Society estimates it can take 10-12 years on average for a diagnosis. That can be a lifetime for a child. However, obtaining a […]
Has a friend recently told you: I feel a pain flare coming on, I’m in a flare, or I’m coming out of a flare? If so, what does this mean for them and what does it mean for you? Maybe you want to help but are unsure how? In this article, guest author Avi, who […]
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 […]
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 […]
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 challenging condition, and are also neurodivergent. As members of the LGBTQ community, Jack and Maria […]
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