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. […]
If you think the healthcare system is broken, you’re not alone. In Rebel Health, Susannah Fox not only agrees, but takes you on a birds-eye view into the grassroots movements growing that’s challenging the status quo in healthcare today in the US. As someone who’s had to navigate the complexities of hypermobility syndromes […]
The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out! How we tallied the results: Each respondent received the same 19 […]
Welcome, pardner, to our new feature, Research Round-up! In each issue, we’ll bring you summaries of some of the latest EDS research to hit the medical journals. We’ll usually have five or so articles, but we’ve got a special edition this time—10 articles for your information and enjoyment! Yee-haw! Hitch up your horse, grab a […]
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 […]
Chronic Pain Partners is excited to share a significant breakthrough from the Norris Lab regarding hypermobile Ehlers-Danlos Syndrome (hEDS). After a long wait, the research, spearheaded by Dr. Cortney Gensemer, identifying a genetic variant associated with hEDS has been published, pinpointing mutations in the Kallikrein gene family. The Kallikrein gene family, known for encoding enzymes […]
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 […]
Did you know that fatigue is the second most commonly described symptom of hypermobility, after pain, according to the NHS and Cleveland Clinic websites? It’s something many of us with Ehlers-Danlos syndrome (EDS) share in common. But maybe if we could learn to pick up on the subtle signals sooner, we can learn to better […]
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Popular People With Ehlers-Danlos Syndrome
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
EDS Physical Therapy Book & Free Webinar: “Living Life to the Fullest with Ehlers-Danlos Syndrome”