This month, we spoke with Amy Wang-Hiller, a violinist living with quadriplegia, hypermobile Ehlers-Danlos syndrome (hEDS), and related complex neuro-connective tissue conditions. As a violin instructor, Amy works with intermediate and advanced musicians navigating changes that affect performance, such as complex neurological disorders. She is also a disability advocate, founder of the InclusiVibe Foundation, and […]
July is a busy month in the Ehlers-Danlos world. The EDS Society’s Annual Global Learning Conference takes place in Allen, Texas, on July 24-26. It will feature a great lineup of esteemed physician speakers, patient organizations, advocates, and presentations covering this year’s theme: “Exploring Comorbidities in EDS & HSD.” It is also the Ten-Year […]
Every July, the disability community marks Disability Pride Month: an annual celebration tied to the signing of the Americans with Disabilities Act (ADA) on July 26, 1990. The ADA was a landmark civil rights law that prohibited discrimination against disabled people in employment, public accommodations, transportation, and government services. It was the result of […]
Going off to college is an exciting time, filled with new adventures and much more freedom, both personally and academically. However, it can also come with numerous challenges, particularly for students with Ehlers-Danlos Syndrome (EDS) and related conditions. On the positive side, increased independence means students with EDS may be able to manage some […]
I live with Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), mast cell activation syndrome (MCAS), and Sjogren’s. Over the years, I’ve undergone more than 40 surgeries, including spinal fusions and brain surgery, many performed while raising my son alone. My son was born 11 weeks early and spent 63 days in the NICU. We […]
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 […]
On March 29, 2026, the Ehlers-Danlos Syndrome 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 Hypermobility Syndromes and EDS awareness. I was first tipped off to the world of hypermobility at […]
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 […]
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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”