Have you ever clicked on the webinar section of our Chronic Pain Partners website and looked through the archives of the presentations featured? In 2013, our founder, John Ferman, started this highly popular educational series with a clear mission to provide free access to emerging research interpreted by experienced physicians. Wow, did he succeed! Looking […]
For many people living with hypermobile Ehlers-Danlos syndrome (hEDS), one of the most frustrating aspects of the condition is pain that feels impossible to explain — burning sensations, widespread sensitivity, symptoms that seem to involve the whole body rather than just the joints. Standard neurological tests often come back normal, leaving patients without answers […]
This week arrived like a storm we already knew by heart,yet somehow… it carried a different kind of wind. For years, they told us our pain was imagined,that our wounds were illusions,that our illnesses lived only in our minds.Those words carved scars we still carryscars that whisper warningseven when no danger is present. Three years […]
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 […]
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. […]
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 […]
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 […]
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 […]
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Popular People With Ehlers-Danlos Syndrome
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”