Community
Emotions When Choosing Self-Health Over Dysfunctional Family Dynamics
TW: If you feel dismissed by loved ones, or struggle especially from family of origin issues related to your invisible illness, this post can be triggering. As I navigate the choppy waters of my chronic invisible illness, I’ve come to a heart-wrenching realization: my family dynamic, instead of being my safe haven, is a downward […]
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 […]
Research Round-Up, Edition 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 […]
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 […]
EDS Back to School Special – Prep for K-12, College & Accommodations
If you are a student or a parent of a child who needs extra support for their illness and/or disability accommodations for school or to enter and succeed in grammar school up to college, this is for you and just in time with our list of helpful resources. For Students K-12 Read our resourceful guide […]
Help Shine a Spotlight: Unveiling the Hidden Triad of MCAS, Hypermobility, and Dysautonomia Through an Upcoming Film
In the vast landscape of healthcare, there are conditions that lurk in the shadows, unseen and often misunderstood such as Mast Cell Activation Syndrome (MCAS), symptomatic joint hypermobility and dysautonomia. Like a camera lens focusing on the minutiae of life, a group of dedicated expert doctors are leading the way in exposing these complex conditions […]
You Made a Difference in Scientific Research for hEDS
Recent Research Published with Community Support Several members of the hypermobile community responded to the calls for data before July 2023 to collect saliva as DNA samples to be shared and categorized by the scientists at the Medical University of South Carolina (MUSC). The MUSC Norris Lab thanks the many patients suffering from hEDS who […]
Podcasts on Ehlers-Danlos Syndrome
With growing awareness about the Ehlers-Danlos syndromes, varying resources in different types of media developed over the last years. Our Chronic Pain Partners’ Team is collecting their favorite books, podcasts and films on EDS and its comorbid condition in a series of listicles you will find on our website over the next months. We have […]
