A long life with haemophilia: Terence’s tale and the power of storytelling

When Terence O’Rourke sat down with Dr Meila Roy of the Southern Haemophilia Network to talk about living a long life with haemophilia, it was about more than memories and reminiscing.

Terence’s life story – where and how he grew up, the challenges he faced, and the choices he was able to make – gives a unique and very personal perspective on a period during which haemophilia treatment changed beyond recognition.

Rare life stories

Like haemophilia, Terence is rare. He is now in his 80s, but it wasn’t so long ago that living a long and fulfilling life was beyond the reach of most people with haemophilia. Before the advent of factor concentrates, life expectancy was low. Then came contaminated blood products, the legacy of which continues to be felt today. 

Haemnet’s Director of Research, Dr Kate Khair, recognises the importance of Terence’s story. 

“It’s easy to forget, or perhaps not to know, about how people with haemophilia managed before we had easy access to treatment,” she says. “Listening to Terence reminds me of how very important it is to have a record of these stories of older men with haemophilia.”

“It’s a bit like VE Day memories,” Kate continues. “We will forget if we don’t ask about and record what it was like for individuals to live through that time.”

Learning to ask questions

In our Haemcast mini-series, ‘Reflections on a life with severe haemophilia’, Terence looks back over eight decades of living with severe haemophilia A. 

Though unable to attend school, he was encouraged to learn and was active in pursuing and absorbing knowledge. He sometimes had tutors, but his education was self-directed to a large extent, providing an escape from the pain of recovering from regular bleeds.

Terence was bright. He passed the 11-plus exam and continued to learn at home through his teens. But as a young adult he was dismissed as someone who would never achieve much in life. After all, he had haemophilia – what could he expect?

As it turns out, Terence could expect much more. Despite his unconventional education and the prejudice he encountered, his approach to learning fostered a mindset to always ask questions – something that has continued to serve him well in his overall approach to life.

Decision-making

Careers advisors had laughed at Terence’s aspiration to be a car designer or an architect. They suggested the best he could hope for was working as an office clerk for a few years, if he was lucky – unemployment was more likely.

However, Terence wasn’t prepared to accept that and delights in having proved them wrong. He went on to study for a degree in architecture, before enjoying a highly successful career in town planning. He would later be awarded an MBE for services to town planning and architecture.

Terence’s questioning approach and desire to always find out more also gave him a strong foundation for living as well as he could with haemophilia. He made his own decisions about how he wanted to be treated. And at a time when shared decision-making was a distant pipedream, he challenged clinicians rather than accepting (as most did) that ‘doctor knows best’.

Tune in and listen

Terence has witnessed a time in history during which treatment for haemophilia has moved from basic at best (plasma transfusions and splinting) to a potential functional cure (gene therapy). As well as shining light on his courage and determination, through sharing his story Terence is helping to preserve memories about a situation that many people with haemophilia no longer recognise. 

Storytelling is always about more than an individual story – it helps build knowledge, understanding and connections between different generations and across communities.

Tune into our mini-series on Haemcast to discover more about Terence’s story.

Further reading

Terence’s father, Joseph O’Rourke, was instrumental in founding The Haemophilia Society. You can read more about this on The Haemophilia Society’s website.

About the author

Kathryn Jenner is Communications and Community Manager at Haemnet Ltd.