Keith Colthorpe has lived with severe haemophilia all his life – yet thanks to a factor VIII gene therapy trial he hasn’t needed any treatment for two years.
His experience highlights the transformation of haemophilia treatment since his birth in 1952 and is one of the reasons he decided to become involved in The Society.
Keith has been at the forefront of medical advances in haemophilia since the 1960s. Under the care of firstly Katharine Dormandy and other directors including Professor Tuddenham at the Royal Free Hospital in London, he was one of the first to have cryoprecipitate, then freeze dried products for home treatment and, in the 1990s, was put on the early trials of recombinant products.
Keith said: “The world of haemophilia has advanced dramatically since I was a child. Thanks to gene therapy, I now have levels of 30 per cent – mild haemophilia, which has been liberating.
“The improvement of treatment we’ve seen in my lifetime has largely come about through pressure from The Society in the past to carry out research, which is why I wanted to play a more active part in the charity.”
In the 70s, Keith was involved in his local haemophilia group in Essex and in the following two decades became a trustee for The Society, while also pursuing his career in the Fire Service Control Room.
He said: “I felt I wanted to get more involved in The Society to help pay back what it had done for me. It has provided education and was always been able to bring new things to us via The Bulletin about treatments, physio, the psycho-social aspects of haemophilia as well as providing camaraderie and peer support.”
Joint damage resulted in Keith having his knee replaced, and an infection six years ago led to the amputation of his left leg. He was fitted with a prosthetic limb and says he has not looked back. Keith has used this experience to support others in The Society who are in a similar position.
Keith said: “As a child I got used to the fact that I was going to have to live my life as carefully as I could. I’ve always tried to go out and do things, but you’ve got to know your limitations.
“So having lived like that for most of my life, I am amazed to be in a position where I haven’t needed treatment for two years. I don’t have to worry about how much treatment I’m going to take and where my nearest centre will be if I’m going away. It’s the most liberating treatment I’ve ever had.”
Keith now plans to make the most of his new freedom by doing more of his favourite hobbies, such as photography and flat-water kayaking. His experience makes him hopeful for improved quality of life for future generations of people born with haemophilia.