Abdul received gene therapy to treat thalassaemia, which he has lived with since he was a child. He shared his experience with Louise, our Senior Health Information Writer and Researcher.
When did you receive gene therapy?
I received gene therapy in 2020, though I first heard about it back in 2016 or 2017. At the time, it felt like something distant, something that belonged in the future rather than something I’d one day go through myself.
What led to you being offered gene therapy, and what other treatments had you tried before?
Living with thalassaemia meant relying on regular blood transfusions and iron chelation therapy. That cycle of hospital visits, fatigue, and managing medication was all I had known. Gene therapy was presented as an option after years of managing the condition. At first, I was hesitant. It sounded intense and complex, but it also offered something I hadn’t ever experienced: the chance of a life without transfusions.
Had you heard of gene therapy before? What did you think about it as an option?
I had heard about it a few years before, but I didn’t fully understand how it worked. It sounded almost experimental, like something from a science documentary. The idea that my own cells could be edited to overcome thalassaemia was hard to wrap my head around. I was the first patient in the UK to go through this particular treatment, so I had no one to turn to for advice or personal insight. That made the decision even more daunting, but it also made me feel like I was part of something important.
What was having the actual treatment like for you?
It wasn’t easy. From the stem cell collection to the chemotherapy and recovery period, it tested me both physically and emotionally. The hospital stay was long, and I had to adapt to a lot of changes. But the thought of not needing transfusions again gave me the strength to push through. That goal helped keep me focused during the hardest parts.
How has your recovery been?
Recovery took time. The first few months were a bit of a rollercoaster, but gradually I began to feel stronger. I started doing things I never thought I’d be able to do. I began going on very long walks, hiking, and managing these hikes without needing to stop worrying about my energy levels or experiencing any aches and pains. I was able to return to work and enjoy a level of independence I had never experienced before. Most importantly, I no longer needed transfusions. That feeling was surreal and something I never imagined I’d be able to say.
What would you say to someone considering gene therapy?
Take your time to understand it fully. It’s not an easy road, and it won’t be the right choice for everyone. But if it’s an option available to you, learn as much as you can. Talk to others who have been through it. Ask questions. It’s a big decision, but it can be truly life-changing.
If you would like to learn more about gene therapy and stem cells, you can read more on our information page.