‘The fortunate few’
Surrey teacher, Joe Pepper, talks with OT about receiving gene therapy for a rare inherited sight condition
07 November 2018
I was diagnosed with choroideremia when I was 10-years-old. When I was 15 or 16, I was getting to the stage where I had to give up cricket and tennis.
I used to be a fairly decent actor but I couldn’t do that because you are acting in theatres where it is always pitch black. I started to give up the enriching parts of life. For me, it was a period of grief. I was losing something and I had no control over it.
When I was finding things difficult, I had friends and family who rallied around and made sure that I still did as much as I could even though at times I just wanted to stay in my house because it was the most secure thing.
My vision is like a tunnel – I have central vision but I haven’t got peripheral. I take certain routes home because I know that the street lighting is good. Whenever I walk into a new building, I will always pause to let my eyes adjust to the new light. Whenever I shake someone’s hand, I try and shake quite high because then it is in my eye line.
Fight for Sight funded the early stage research into choroideremia. From there, Professor Robert McLaren at the University of Oxford started to develop a form of treatment. In 2015, I got a phone call that I thought was a PPI call. It was a private number and they kept on calling throughout the whole day. Eventually I answered and they asked me to be part of the trial. I had always ummed and ahhed about whether I would do it but on the phone I immediately said yes. This was a once in a lifetime opportunity for me. I couldn’t afford to lose any more sight.
That is 1.75 million people in the UK who suffer from sight loss and will never have a cure if we continue like this
Eight weeks later I was going into the operating theatre and having my eye injected with a virus that was used to insert the correct DNA into my cells so that the missing protein was produced. After the operation, I had my month one test. When I was doing the usual eye chart test, I had a light bulb moment. I realised that I was about to go on reading past a point I had not reached in a decade. I read the equivalent of four lines on the eye chart more than I could before. I was sitting there reading and I had tears just streaming down my face with this massive grin.
Fight for Sight is the UK’s largest charity funding pioneering eye research. However, only one in eight research projects go ahead because they haven’t got the funding. That is 1.75 million people in the UK who suffer from sight loss and will never have a cure if we continue like this. That’s why I’m supporting a virtual running event to help raise awareness.
I call myself one of the fortunate few. I am fortunate but there are not many of us. Maybe thirty years ago people talked about science as this big pie in the sky hope. It is reality now. We are using viruses to give people back the genes in their eyes. Ultimately, whatever amazing opportunities and experiences I have now, they are all trumped by that one occasion when my vision was restored. I hope that more people can have the experiences that I have had.