Articles
Overcoming Barriers With Creativity: Watch Lego Oma
People with Ehlers-Danlos syndrome (EDS) often face physical barriers limiting access and opportunity, yet our community is incredibly resilient and adept at finding creative solutions to overcome these challenges. These obstacles, often centered around mobility limitations and chronic pain, are familiar territory for many of us. But Rita Ebel, the focus of the new Chronic […]
Chronic Illness Apps: Why Use Them and Ones to Try for EDS Management
Why Use Technology in HealthMany of us wish there was an-in-one ideal app to help manage Ehlers-Danlos syndrome (EDS) so patients and their caregivers could have an easier time managing health data, symptoms, doctors, medical records and more. Everyone knows healthcare is going digital, and Artificial Intelligence (AI) is likely to change the landscape of […]
Research News: Could a Blood Test for hEDS & HSD Be Possible?
The EDS Society announced a promising breakthrough in research they funded published September 3, 2024 by a group of Italian scientists in the American Journal of Genetics using their HEGDE registry for the US cohort. Scientists have identified a specific protein in the blood that appears to be present at higher levels in individuals […]
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 […]
Understanding the EDS Pain Maze
September is Pain Awareness Month—a time to shine a light on the silent journey of so many chronic pain sufferers. The unwavering type of pain that lasts for longer than six months called “chronic pain” can seem endless when you have Ehlers Danlos syndrome (EDS). It is likely the most common symptom so many of […]
Research Round-Up, volume 2
→ BREAKING NEWS: Study finds biomarker that could lead to a blood test for hEDS & HSD ← Welcome back to the Research Round-Up, a summary of medical news you can use. We’ve got a lot of great research for you this month, so giddy up and git going! Yee-haw! If you have an article […]
Part 5: Healing the Hurt: How To Handle Clinician-Associated Trauma
Over the past several months, Chronic Pain Partners has published a series of articles about clinician-associated trauma based on the paper “Clinician-associated traumatization from difficult medical encounters: Results from a qualitative interview study on the Ehlers-Danlos Syndromes” by Colin M.E. Halverson, Heather L. Penwell, and Clair A. Francomano. The last four Chronic Pain Partners articles […]
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. […]
