Research
Measuring the Unmeasured
What Two New Studies Say About the Head, Neck, and hEDS People with Ehlers-Danlos syndrome have heard for years that their symptoms are “in their head.” In one sense, that may be true—but not in the way we all hate to hear. When it comes to symptoms like headaches, nausea, dizziness, brain fog, visual disturbances, […]
From Patient to Researcher: An Interview with Jeevan Mann
Jeevan Mann is a patient researcher, patient leader and runs an organization called Medical Inspiration, which subsidizes care for patients with EDS as well as educates medical providers on the condition. CPP‘s Karina Sturm spoke with Mann about his rare EDS type, how he became a patient researcher and the important work his organization is […]
Research Round-up, Edition Six
Previous editions of Research Round-up can be found at the following links: Edition 5 (Pediatrics) Edition 4 (Neurodivergence) Edition 3 Edition 2 Edition 1 Howdy, partners! This Research Round-up has roped in a whole herd of topics for you. We hope you enjoy the read, learn a thing or two, and feel […]
New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome
The Norris Lab published yet another new research finding regarding hypermobile EDS: the involvement of the complement system. Chronic Pain Partners has recently reported about the Lab’s groundbreaking discovery of Kallikrein, a gene believed to cause hEDS. We shared the initial findings and a later updated version of it. Published in ImmunoHorizons, this additional 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.
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it
Cerebral venous outflow disorders describes a spectrum of conditions related to issues with how fluid drains from the brain.Experts are observing a connection between connective tissue disorders (like hypermobile EDS) and cerebral venous outflow disorders. Cerebral venous outflow disorders can cause pressure headaches (that often worsen when lying flat), dizziness, pulsatile tinnitus (a rare vascular form of tinnitus), neck pain, tenderness at the base of skull, vision disturbances, ‘brain fog’, and cognitive dysfunction. Cerebral venous outflow disorder may look different when it presents in individuals with connective tissue disorders than in individuals without, creating diagnostic challenges.
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 […]
