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.
After the “Fourth Wing” book series, Chronic Pain Partners became aware of a new romance novel, “The Chemistry Test”, written by Georgina Frankie, which features a character with Ehlers-Danlos syndrome (EDS). In a genre where disabled characters are often either absent or reduced to stereotypes, Frankie brings a refreshing perspective: a love story that embraces […]
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 […]
When host CHristie was not able to walk and talk in 2021, she lost the career she had built as a radio DJ. What began as a personal way to process those changes—recording short reflections on living with Ehlers-Danlos syndrome—has since grown into AWOL Zebra, a daily podcast that has reached listeners across countries. AWOL […]
Guest post by Jon Rodis, President of the Connective Tissue Coalition Finding respectful, knowledgeable care can be difficult, especially for those living with complex or chronic conditions. After years of what I call “the doctor shuffle,” I discovered strategies that helped me strengthen my care and build a supportive medical team. Here are the […]
You hear a cat meowing as you walk past your neighbor’s apartment. Your lease says you can’t have any animals—she’s going to be in big trouble if the property manager finds out. You visit your grandmother in the rehab hospital, and she’s holding a bunny rabbit and smiling widely. At dinner that night with your […]
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 […]
Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I remember sitting at a party, listening to conversations that once felt familiar, and being hit with the stark contrast between their lives and mine. […]
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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”