Managing Ehlers-Danlos
Seeing the Spine in Motion: Exploring the Potential Benefits of Upright MRI in EDS
This article explores whether upright MRI may be a useful tool for evaluating EDS-related spinal instability. Understanding the limitations of standard MRI and what positional imaging could offer instead, may help patients, clinicians, researchers, advocates, and healthcare providers better navigate the complex neurosurgical landscape of EDS. Why Supine MRI May Miss the Problem Cervical […]
My Ostomy Saved My Life
Celebrating My Two-Year Stoma-Versary I used to feel like I couldn’t say, “my ostomy bag saved my life,” because I didn’t get my ostomy bag for the same reasons a lot of people do. Some of the most common reasons people need ostomies are for inflammatory bowel disease (IBD), acute infections like diverticulitis, or colon […]
Netflix’s Run Away Quietly Gets EDS Right: Ambulatory Wheelchair Use
Run Away, Netflix’s latest Harlan Coben adaptation, has many twists and turns. However, for the EDS community, the most meaningful revelation isn’t even a plot. It Is one of the first accurate depictions of an ambulatory wheelchair user. Run Away is a dark thriller/drama about Simon Greene, who is searching for his daughter Paige. With […]
The Silence After Survival
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 […]
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 […]
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 […]
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. […]
