Managing Ehlers-Danlos
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 […]
Much More Than That
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 […]
Website Revamp: Chronic Pain Partners – A New Look for EDS Awareness
We are thrilled to announce the launch of our newly revamped website at the same location, www.chronicpainpartners.com! As a nonprofit dedicated to raising awareness about Ehlers-Danlos Syndrome (EDS) and providing vital resources to the community, we have always strived to offer comprehensive support to patients, caregivers, and healthcare providers. With the recent website overhaul, we’re […]
Book Review of New EDS Book Symptomatic
The Ehlers-Danlos Syndromes (EDS) are complex and multifaceted conditions that have, for decades, challenged both patients and medical professionals alike. Over recent years, several books have been published on EDS. For instance, Dianna Jovin’s Disjointed and Christie Cox’s Holding It All Together, among many others. Recently, Symptomatic joined the list. Edited by EDS experts Dr. […]
Documentary Films on Ehlers-Danlos Syndrome
Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date. Ehlers-Danlos […]
Find Answers Faster: The EDS411 Living Library
Discover the EDS411 Living Library App Imagine a place where you can find reliable, community-sourced information about Ehlers-Danlos Syndrome (EDS) without the endless search through disorganized forums or the distracting noise of social media. Welcome to EDS411 Living Library, your ultimate resource for navigating EDS with confidence and ease brought to you by EDS S.H.A.R.E. […]
