Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)
Dr. Grahame and CPP Social Media Manager Jan Groh at EDNF 2013.
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 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 This introduced me to symptomatic Hypermobility Syndrome (a now outdated term) and the possibility that I wasn’t “just bendy”.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 two leading clinical reference books, Hypermobility of Joints with Drs. Peter Beighton and Howard Bird initially in 1983, last updated in 2012. And also Hypermobility, Fibromyalgia and Chronic Pain in 2010, along with several other papers as far back as 1971. He was one of the first clinicians to recognize that joint hypermobility was not just a trait, but could also be accompanied by chronic pain, easy injury and later body-wide co-occurring issues and symptoms. He helped medicine recognize the genetic basis of the hypermobility syndromes (Malfait, Hakim, DePaepe and Grahame) in 2008. He ultimately shepherded what was once called Hypermobility Syndrome, or Joint Hypermobility Syndrome, to later be recognized as hypermobile EDS, and the Hypermobility Spectrum Disorders in 2017.
He also spoke at most of the EDS Learning Conferences over the last fifteen-plus years, including at the Ehlers-Danlos National Foundation 2013 Learning Conference 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. In the 2014 EDNF Conference, Dr. Grahame remarked that “no other condition in the history of modern medicine has been neglected in such a way as Ehlers–Danlos syndrome,” capturing the widespread concern and experience that the forms of EDS were profoundly under-recognized and under-treated. This has been very validating for patients and EDS specialists alike.
“no other condition in the history of modern medicine has been neglected in such a way as Ehlers–Danlos syndrome” – Rodney Grahame CBE, MD, FRCP 2014
Dr. Rodney Grahame was appointed Commander of the Order of the British Empire in 1998 for his services to disabled people, reflecting his profound impact on the recognition and care of connective tissue disorders. Here, the Ehlers-Danlos Society made a tribute video to Professor Grahame on his 50th anniversary as a doctor in the NHS in 2018. 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.
