Pain of EDS
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 […]
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. […]
Understanding Your Flare Fettered Friend
Has a friend recently told you: I feel a pain flare coming on, I’m in a flare, or I’m coming out of a flare? If so, what does this mean for them and what does it mean for you? Maybe you want to help but are unsure how? In this article, guest author Avi, who […]
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 […]
Navigating the Holidays with EDS
Yes, it’s time to get ready for travel, dietary changes, and potential overwhelm. But we’re here to help you keep the peace!The holiday season can bring joy, but it also tends to come with stress, pressure, and endless obligations that can wear us down. For those of us with Ehlers-Danlos Syndrome (EDS), this time of […]
Understanding the EDS Pain Maze
September is Pain Awareness Month—a time to shine a light on the silent journey of so many chronic pain sufferers. The unwavering type of pain that lasts for longer than six months called “chronic pain” can seem endless when you have Ehlers Danlos syndrome (EDS). It is likely the most common symptom so many of […]
A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated
As a parent, it is hard to witness your child suffering with symptoms and physical pain. As mothers, we are often looked to, to make everything better, right? When my kids started having medical issues, I quickly learned that there was no parenting book to teach how to comfort and support your child when an […]
New Study: Pain Threshold and Sensation in cEDS
A new study from Ghent, Belgium, discusses the difference between pain sensation and pain thresholds between subjects with genetically-confirmed classical Ehlers-Danlos syndrome (cEDS) and those without any form of Ehlers-Danlos Syndrome (EDS). The article, published in The Journal of Pain, discussing this research is “Sensory Profiling in Classical Ehlers-Danlos Syndrome: A Case-Control Study Revealing Pain […]
