Bill Payne was born the same year The Haemophilia Society was created and remains a loyal member today.
His mother signed the family up in 1951 when Bill was diagnosed with severe haemophilia B. They benefited from advice and support from The Society over the years and, as an adult, Bill became an active volunteer, serving as a trustee and coordinating the Bristol and South West Haemophilia Group.
Treatment for haemophilia has changed beyond recognition during Bill’s lifetime. He remembers a childhood spent between hospital, school and home when bedrest was the main treatment for bleeds. He found it hard to make friends and do well with his education because of his frequent hospital stays.
All that changed aged 11 when, in 1962, he attended Treloars school in Hampshire as a boarder. Here he met other boys with haemophilia and had a chance to be independent. Bill said: “Going to Treloars made a huge difference. I was able to be me, rather than somebody that was wrapped up in cotton wool.”
Gradually Bill’s treatment changed over the next decade and he moved to fresh frozen plasma and then freeze-dried product. In about 1973 he moved to home treatment with factor IX concentrate.
Having control of his treatment meant that for the first time Bill was able to hold down a full-time job at an electronics company. Yet that freedom was to come at a terrible price and Bill remembers with great pain how so many of his friends from Treloars died as a result of the contaminated blood scandal. Bill and his brother Michael were both infected with hepatitis C. Michael died from his infection a few years ago.
Bill said: “There were 50 haemophiliacs when I was at Treloars and very few were left after the decimation of contaminated blood. We’ve got to keep this issue alive so that people understand what happened and make sure it could never happen again.”
Born in Bristol, Bill has lived in the city for most of his life. He served on the city council for 12 years and was honoured to be made an alderman. He and Margaret, his wife of 50 years, have a daughter Emily and two granddaughters.
“The Society has always been there when I needed it. It has provided support and advice. I’ve enjoyed being involved as a trustee too and taking on that extra responsibility.”Bill
Advances in treatment mean that if Bill had been born today he could be looking at a future which, thanks to gene therapy, could mean his haemophilia was “cured”, but he has mixed feelings about this.
He said: “Being a haemophiliac is part of who I am and, as strange as it may sound, I would be losing something if that was taken away.
“When I was younger, I had a bad bleed which resulted in me staying at home to look after my daughter and my wife going out to work. I feel very grateful to have had the chance to have such a close relationship with her. She learnt about haemophilia and wasn’t scared by it. It is part of who we are.”