Advocate
Welcome to Lipedema Awareness Month
June is Lipedema Awareness Month. The disease is still widely unknown to people and clinicians. So we are sharing its presentation, how to diagnose and treat it, and, most importantly, how it is connected to Ehlers-Danlos Syndrome (EDS). About Lipedema Lipedema is a complex and poorly understood abnormal fat disease that tends to affect mainly […]
“It’s All in Your Head”: New Study Confirms What hEDS Patients Have Been Told for Decades
A landmark study has revealed what most people with hypermobile EDS (hEDS) already knew since disease onset: a staggering rate of psychiatric misdiagnosis among patients with hypermobile Ehlers-Danlos syndrome (hEDS). The study found that 94.4% of patients were initially misdiagnosed with psychiatric conditions—often by physicians without psychiatric expertise—before receiving an accurate diagnosis of hEDS. Many […]
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 […]
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 […]
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 […]
New Research Study Finds Everything is Connected, As Many Patients Suspected
A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
