Articles
Interview with Georgina Frankie: Author of “The Chemistry Test”
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 […]
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 […]
AWOL Zebra Podcast: Building Community (and Laughs) Around EDS
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 […]
Building a Supportive and Caring Medical Team No Matter Where You Live
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 […]
Can I Pet It?: Understanding Animal Helpers
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 […]
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 […]
The Quiet Weight of Chronic Illness Grief
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. […]
“Primary Care Without the Gaslighting”: How Chronius Health Is Rethinking Care for People with EDS and Complex Conditions
Accessing consistent and compassionate care as a person with Ehlers-Danlos syndrome (EDS) and related conditions remains one of the biggest challenges in the healthcare system – no matter the country we live in. From delayed diagnoses to a lack of coordinated support, patients often find themselves piecing together care from multiple specialists—while simultaneously managing insurance, […]
