Elliott’s Story

‘I had gene therapy five years ago – and haven’t had a bleed since’ 

Thanks to gene therapy, Elliott hasn’t needed any treatment for his severe haemophilia B for more than five years. 

In 2019, aged 29, Elliott took part in a gene therapy trial at the Royal Free Hospital in London. Since then, his clotting levels have been consistently around 60%, compared to the levels of less than 1% that he was born with. He had been treating himself twice a week with clotting factor before his gene therapy. 

Elliot said: ‘Most days, I take my new situation for granted, but every now and then I have a moment of retrospection and think about what a difference gene therapy has made. My quality of life is so much better, I feel in the best health of my life. 

‘When I was younger, I felt quite bitter about having haemophilia and I used to deliberately take risks with my health as a kind of rebellion against my condition. Now, after gene therapy, I have altered my perceptions. Having been given this chance I don’t want to do anything to jeopardise it, so I make sure I look after myself.’ 

As well as not having to worry about spontaneous bleeds, Elliott appreciates smaller things, such as not having to take a suitcase full of medication on holiday with him, and being able to work out strenuously at the gym without spending days in recovery afterwards.  

For Elliott, there was an additional reason why he decided to undergo the gene therapy trials. His brother, Joshua, died as a newborn baby due to a brain bleed, and his great uncle died aged 14 as a result of the condition.  

Elliott said: ‘I did gene therapy partly because of the benefit I would receive, but also because my family has suffered because of a lack of treatment. If my brother had survived the trauma of his birth, he would hopefully have been OK, and eligible for gene therapy. I couldn’t do anything for him, but I felt this trial was something I could do to help improve treatment for the future.’ 

It took Elliott a year to decide whether to take gene therapy and, although his experience has been very positive, he advises anyone considering it to take their time and to think carefully about what could happen. 

He said: ‘Make sure it is the right thing for you. Talk to your family, think about every outcome whether that be good or bad. Do your own research and make your own mind up. It is about risk versus reward.’ 

Elliott is often asked if his treatment is still working and does, sometimes, imagine waking up and finding that it has ‘worn off’. He said: ‘If I had to go back to injecting myself, then I’d cope – it’s what I’ve always done. I will always be grateful for the quality of life I’ve had for the last five years, which hopefully will continue for a good while longer.’