04/02/2026
I was heartbroken to learn of the passing of the incredible Professor Rodney Grahame on March 29th.
I have known Rodney for almost 20 years, first as a patient and over time as a mentor, colleague, and dear friend. He was one of the very first doctors who truly saw me, believed me, and validated what I was going through when so many others did not. He asked questions I didn’t even realise I had answers to, and he had answers to the questions I had been asking others for years. Most importantly, he understood.
I often think back to 2007, when I was unwell with an infection, unable to stand without my heart racing, my blood pressure dropping, surrounded by doctors telling me it was anxiety. I felt lost & dismissed. I discharged myself and went straight to Rodney. In that moment, everything changed. He was the first to speak to me about POTS, and to recognise that it could coexist with EDS. Because of him, I finally had answers, received the care I needed, and was able to recover.
Rodney didn’t just change my care, he changed the course of my life. His influence is woven into so much of what I do today.
He supported me through so many moments, including helping me reach the finish line of the London Marathon in 2011, even while gently reminding me I probably shouldn’t do it. He stood beside me throughout my career, from EDS UK to The Ehlers-Danlos Society, always offering guidance, encouragement, and unwavering belief.
What made Rodney so extraordinary was not only his clinical brilliance, but his humanity. He fought tirelessly for our community, for recognition, for validation, and for people to be taken seriously. The Ehlers-Danlos syndromes were his life’s work, and he gave that work his everything.
I am so grateful I was able to spend time with him in the last few months at his home with his wonderful family.
Rodney, thank you, for believing in me when others did not, for guiding me when I felt lost, and for standing beside me through so many chapters of my life. Your legacy will live on in every person who feels heard & believed because of the path you helped create. I will miss you my friend.
