Articles
Current Administration Threatens Medicaid – April 2025
Since the new administration took office in January, policy changes have been moving fast. Currently, the Republican led Congress (the House) is dangling the threat of major budget cuts to social safety nets over the senior and disabled community, leaving a lot of EDSers and others quite stressed about the continuity of their health care […]
We’re Not Confused – The System Is: Community Survey Shouts for EDS/HSD Classification Change
May 2025By Maggie Buckley, BCPA and Christie CoxEDS Patient Advocates and Community Researchers Editor’s Note This article was originally developed as a proposed abstract for submission to The Ehlers-Danlos Society’s scientific symposium. Our goal was to share real data from patients on how the current classification system for EDS and HSD affects diagnosis, care, and […]
New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders
A recent study conducted by Ruhoy et al. investigates the frequency of comorbidities and the need for neurosurgical interventions in individuals with connective tissue disorders (CTDs), offering valuable insights into the multifaceted challenges faced by this patient population. What’s the study about? CTDs are a diverse group of disorders that impact connective tissue, leading to […]
Why Is It So Hard To Get A Genetics Appointment For My Child?
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 […]
Understanding Your Flare Fettered Friend
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 […]
The Extra Mile: Why This 79-Year-Old Pioneering Physician Is Running the Boston Marathon
Not all heroes wear capes, sometimes they wear sneakers. At age 79, Dr. Michael Holick is preparing to run the Boston Marathon to raise awareness for a group of patients he’s long championed: those living with Ehlers-Danlos Syndrome (EDS). It will be the second time he has completed this historic and rigorous road race. Although […]
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 […]
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