Now 26, SALLY not only manages diabetes but a full-time job as an animator, and a career as a Drag artist, performing regularly across the UK and closer to home in the North East.

They added: “I’m in a much better place now, but it can still be difficult. Managing blood sugar levels, hypos and hypers on a demanding schedule isn’t always easy but I have a good support network around me.

“Some weeks can be hectic; I can be working 9-5 and performing several nights a week until 2 or 3 in the morning.  Friends and colleagues know I have type 1 and what to look out for if I need to treat a hypo or hyper. I’m grateful for that support system.”

They added: “I wish I’d had access to some more specialized support growing up, but I’ve come a long way on my diabetes journey. I’ve learned to accept who I am and my diabetes.” 

Diabetes UK’s youth programme offers peer support, information and guidance for young people aged 11-25, living with type 1 diabetes.
 

I started medical school over five years ago and am due to qualify in 2024. After leaving school I completed a BTEC in equine studies before working as a carer. It was during this that I found a love of healthcare but started to struggle with the limitations of my job, wishing that I could do more to help people. Aged 21, I joined an access to medicine course, and that is how my medical career began. 

One of the interesting things I’ve experienced since my diagnosis is that diabetes and particularly type 1 diabetes seems very poorly understood by the general population. It’s not simply a case of ‘type 1 diabetes is just insulin and type 2 is lifestyle’.  

There’s so much variation between people, and so many complications, it’s a disease which is different for everyone and that makes it so much more difficult for people to understand. 

Diabetes is prevalent in our family – my sister has type 1, as did my grandfather, and my father was diagnosed with type 2 not long before he died when I was 16. It had become commonplace though because it’s been in the background of our lives for so long. I hadn’t seriously thought about my risk of developing type 2.  

My daughter works for Diabetes UK and often shares news stories and research about diabetes with me. I decided to fill in the Know Your Risk tool when I heard about Diabetes UK and Tesco’s big campaign to help more people find out their risk of getting type 2 diabetes. I thought it might just be an interesting thing to do because of our family history. I wasn’t necessarily expecting to find out that I was at risk. 

The Know Your Risk tool said I was at moderate risk, which I found quite shocking. It shouldn’t have been because I know I’m overweight and have a family history, but nevertheless, it was a bit of a wake-up call. 

Hannah has other health conditions to manage alongside diabetes and PCOS. She also lives with irritable bowel syndrome (IBS) and, last year, was diagnosed with hidradenitis suppurativa – a painful, long-term skin condition that causes abscesses and scarring on the skin.

“This means that every year I’m likely to have to have two or three surgeries to drain and then pack the abscesses. This year I had one surgery on my birthday and two weeks later I was back in again for another one.”

Avishay told me about his school friend getting ill and they found out he had type 1 diabetes. I was surprised about Avishay's knowledge of type 1 diabetes and all that his friend has to do, like checking his blood sugar levels every lunch and injecting himself. And I thought oh wow, that's a lot for a little child.

When I heard about the ELSA study and that it was about type 1 diabetes, I told Avishay right away. I got sent a text message from the doctor surgery inviting us to take part. It said if you’ve got a child aged 3-13 years they could get screened to find out their risk of type 1 diabetes. So we talked about it as soon as Avishay came home from school and he said, ok let’s do this. He wanted to help research and he thought it was something he could do to help with diabetes, and help his friend.

I thought if he is at risk of type 1 diabetes I would rather know sooner, rather than when he could become ill and end up in hospital like his friend. You want to know before it gets serious.

So it wasn't something we took too long to decide about it really. As soon as we got the invite to take part, we thought it was a good idea.

Taking part in ELSA

I filled in the forms online and we had a chat with a lady before it all started. We got a kit sent through the mail and had to prick Avishay’s finger to get a few drops of blood. The first time we pricked his finger we could only get one tiny drop, so we had to have another go. But it wasn’t too tricky once we got the hand of it and it was really quick.

It was about a week before we heard back on the results. I got a text message first and then a letter in the post a couple of days later. They came back negative, so Avishay’s got a low risk of type 1 diabetes, which came as a relief.

Whenever I’ve heard about someone getting type 1 diabetes, they get ill first and end up in hospital. I didn’t realise there was any type of screening, so I was a bit surprised when I first heard about ELSA.

"Children are tested for lots of things when they’re born so it makes sense that they should be tested for type 1 diabetes too. It’s a shame that kids have had to end up in hospital when this screening could help avoid that."

When you’re taking part in research you know that you're helping people somewhere, it does feel good. Avishay wants to be a scientist now. He told me the other day he wants to find a cure for diabetes.