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 massage therapist in the summer of 2007 after I suffered a back injury from merely twisting while organizing medical records at my job. Upon Googling the word hypermobility, I stumbled on an article by Dr. Grahame. This introduced me to Hypermobility Syndrome (a now outdated term) and the possibility that I wasn’t “just bendy”. While I did not get diagnosed then, his advice was enough to help me live a bit more carefully and avoid further injury. In February 2012, I was finally diagnosed with hEDS by a geneticist.

 Dr. Grahame was a deeply compassionate clinician, sympathetic to patients and supportive of fellow doctors at a time when information was scarce. Over his career as a rheumatologist in London, Dr. Grahame helped diagnose hundreds of patients, providing much-needed medical validation to those who often endured long and painful diagnostic journeys.

His impact extended beyond individual patients, shaping awareness and understanding at the clinician and community levels. Dr. Grahame served as an advisor to the HMSA until his passing, and co-authored a leading clinical reference book, Hypermobility, Fibromyalgia and Chronic Pain in 2010, along with dozens of other publications. He also spoke at most of the EDS Learning Conferences over the last fifteen-plus years, including EDNF 2013 in Rhode Island, where I briefly met him (see picture above) and my late friend and fellow EDS champion, John Ferman, founder of Chronic Pain Partners. 

Dr. Grahame will be sorely missed by our entire community worldwide. He leaves an outsized legacy of improved patient care, advocacy, and access. We are forever grateful.

Jan Groh, author of the blog OhTWIST 

and co-author of the EDS GP Toolkit