Guys hospital research unit hosted a group of MPs and Diabetes UK staff for a tour of their facilities today. Guys has a world class research facility and does more for diabetes research than I could do justice to here. The number of dedicated staff supported by sophisticated (and expensive) machines gave me renewed hope that we can beat type 1.
I was asked to speak about my experience of being diagnosed and of participating in a clinical trial. I’ve written about my diagnosis quite a bit in the early days of this blog, but with the benefit of hindsight, I thought I could summarise my experience with a few pictures.
Before diagnosis, I was leading a normal (actually very happy) life. Like anyone, the usual thoughts occupied my thoughts:
One day, after my health deteriorated suddenly, I was told I had type 1. That Friday afternoon, my normal life and normal thoughts were shattered as Dr Powrie told me I had an incurable, lifelong disease which required 24 hour care administered by myself. Diabetes hadn’t only destroyed my pancreas but had moved into my brain to occupy almost every waking thought:
(After drawing this picture I realised I’d drawn me smiling. I was obviously extremely upset about my diagnosis, but I’m proud to say that Dr Powrie was impressed at my positive attitude!) I was asked to take part in a phase one clinical trial – the monopeptide study – at Guys hospital. It is a potentially revolutionary treatment which isolates the immune response responsible for my beta cell destruction. I agreed to join the trial. I might be cured, after all!
Unfortunately I can report that I still have type 1. But the real benefit of the trial was that I spent two hours a fortnight at the hospital with research doctors and nurses. They did a huge amount to enable me to come to terms with my new life and answer the hundreds of questions I had about my condition. Fun and Laura’s support helped enormously with my transition to living a normal life again:
I still have to think about diabetes throughout every day of my life. But it’s a habit, like riding a bike, or eating my breakfast in the morning. I spend as much mental energy these days worrying about work, how to be a faster runner or what birthday present to give Emily.
So, my message to the new intake of MPs, when considering how to allocate our nation’s scarce resources is this: not only will research inevitably lead to better management and eventually a cure to this disease, benefiting the 400,000 type 1s in the UK alone (the crowd of people below). It also provides a wonderful added bonus. In the UK, every hour one more person – probably a child – has their normal life shattered by a type 1 diagnosis. Participation in research helps an individual or family learn about the condition. Hopefully that scared looking person in the bottom left, below, can come to terms with their diagnosis, and thrive.
As a post-script, I’m not sure whether I received the monopeptide or a placebo as part of the trial. But I still produce quite a lot of insulin two years after my diagnosis. And during the trial my insulin requirements were extremely low for a diabetic. If this drug is successful, it will not only be important to prevent diabetes in “at-risk” individuals, but would make the lives of recently diagnosed diabetics much easier.