Research
Update On Gene Linked to Hypermobile EDS
A new study, led by Dr. Cortney Gensemer, marks a genetic breakthrough in hEDS research. The KLK15 variant (p.Gly226Asp) has been identified as a direct disease-causing gene in hypermobile EDS, causing connective tissue dysfunction and immune system dysregulation.
From Diagnosis Odyssey to Scientific Vision: A New Genetics EDS Lab in Norway Opens Its Doors
Most people living with Ehlers-Danlos syndrome (EDS) are used to a long and straining path to diagnosis, full of prejudice and gaslighting. Davina Brigant knows this journey all too well. “As far as I remember, during my childhood, I always had some problems. I was very flexible. People always told me that about myself, because […]
Research Round-up, Edition Five: Pediatrics
Welcome back to Research Round-Up. This time, we’re looking at research that focuses on Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the young ‘uns, from birth to age 18. While some of the effects of EDS can be the same on adults as on the little ones, sometimes, the kiddos have more to […]
“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 […]
New Pain Killer on the Market: Suzetrigine
Summary The medicine is sold as Journavx, with the chemical name Suzetrigine. It works by blocking NaV1.8 channels, which are responsible for pain transmission along nerves. It only affects peripheral nerves (outside the brain and spinal cord), such as those in the arms and legs. It does not cause addiction. However, Journavx is weaker than […]
Research Round-Up, Edition 4: Neurodivergence
Previous editions of Research Round-Up: Three, Two, One Welcome to the latest edition of Research Round-Up! If you’ve missed previous editions and want to know what’s happening in the world of EDS research, click the links above. This month, we’re doing something a little different. Instead of individually discussing some recent research articles, we’re taking […]
Research Round-Up, Edition Three
Welcome back to Research Round-up where we feature some of the latest developments in Ehlers-Danlos syndrome (EDS) research. Hitch up your horse, gather ‘round the campfire, and see what we have in store for you today. ICYMI: a possible blood test for hEDS? Cardiology“Longitudinal echocardiography in pediatric patients with hypermobile Ehlers-Danlos syndrome”Published in the American […]
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 […]
