A couple of weeks ago I attended the Strength in Numbers conference in Galway, Ireland as both a researcher and a person with Type 1 Diabetes. It was a strange conference for me, I’ve been to conferences full of health economists, I’ve been to conferences full of healthcare professionals, and I’ve been to the odd event with lots of people with type 1 diabetes. But it was the first time I’ve been to a conference with a balanced mixture of everyone.
Prof Sean Dinneen, Mary Clare O’Hara and Lisa Hynes intentionally organised the conference so it would bring researchers, healthcare professionals, and people living with type 1 diabetes under the same roof and I think worked really well. I’m not going to go into detail of the presentations, as a blog post giving a brilliant overview already exists here.
The research team in Galway have just launched the D1 Now study which is trying to find ways to help young adults with type 1 diabetes and the statistics from the UK national diabetes audit are crazy. A young man living with type 1 diabetes is 4.5 times more likely to die than a young man without diabetes. And a young woman is 7 times more likely to die than a young woman without diabetes. Don’t panic, we’re not going to die, young people rarely die so the numbers are very low but it still shows we need more help. And the D1 Now study is trying to find the best way to do that.
At 26 years old, I feel like I understand the colossal nature of the problem the D1 Now study is facing – trying to reach out and engage with young adults who do not want to have diabetes. As a teenager, I didn’t want to talk about my diabetes to anyone. I didn’t want to have diabetes but I understood I had to do the bare minimum to avoid hospital and struggled on. I would go through phases of trying hard but this would last a few weeks and then back to same old habits.
Since then, I’ve matured a little and accepted my diabetes. I wouldn’t say I like diabetes but I am fascinated by it and this fascination definitely helps me manage it better. I know there are numerous factors which influence sugar levels but I want to find them. Our bodies are essentially complex machines and when my sugar levels go high or low, there has to be a reason. Without this reason, my fascination turns to frustration so I tell myself there has to be a reason.
So how do you get young people interested in their diabetes? I don’t even know when I became interested in diabetes? I’m not sure how the D1 Now Study will approach the problem but the Hackathon event which took place the day after the conference was inspiring. Lots of technology people working with healthcare professionals and people with T1D to build apps and all sorts of things to help us. Hopefully these ideas will develop and help the D1 Now Study become a success.