Advocate
Why May is The Moment for “Complicated”
We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]
Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)
On March 29, 2026, the EDS community lost one of our most beloved specialists and longtime champions of EDS, UK rheumatologist Dr. Rodney Grahame. He will be remembered as one of the earliest and most vocal advocates for EDS awareness. I was first tipped off to the world of hypermobility at age 40 by my […]
A Thank You to Karina Sturm for Her Leadership at Chronic Pain Partners
We want to share our sincere thanks to Karina Sturm as she steps down from her role as Editor-in-Chief at Chronic Pain Partners. Karina’s drive and mission have always been deeply personal, shaped by her own journey with EDS and invisible disability. Since joining us in 2019, Karina has poured her heart and soul into […]
From Patient to Researcher: An Interview with Jeevan Mann
Jeevan Mann is a patient researcher, patient leader and runs an organization called Medical Inspiration, which subsidizes care for patients with EDS as well as educates medical providers on the condition. CPP‘s Karina Sturm spoke with Mann about his rare EDS type, how he became a patient researcher and the important work his organization is […]
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
With heavy hearts we are sharing that our founder and team champion John Ferman has peacefully passed away Tuesday night, November 11, 2025, surrounded by his daughters, Deanna and Deborah. John founded Chronic Pain Partners/EDS Awareness in 2011 in an effort to raise awareness and understanding about EDS and related conditions after his wife Carol […]
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family
Parenting children with Ehlers-Danlos syndromes — or EDS — is a sport on its own. From the moment my children were born, I knew something wasn’t right. They were symptomatic from birth, but for years, doctors couldn’t figure out what was going on. And even when we finally found answers, the hardest battles weren’t against […]
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 […]
