I first came across the ELSA study when I was scrolling on social media in late 2023. Having type 1 diabetes, I knew that Imogen would have a higher risk herself and at the back of my mind I’d always thought – ‘is this going to be part of her journey?’. So, I signed her up straight away.

The pack came in the post with a finger-prick blood test kit. We did it, sent it off, and then honestly forgot about it.

Two or three months later I got a call from a member of the ELSA team. They explained that Imogen had some of the protein markers in her blood that they test for, called autoantibodies. But we’d need to visit a hospital to have a further blood test to confirm the results and find out how many autoantibodies Imogen had. That would tell us more about her future risk.

We got a phone call with those results a few weeks later while Imogen and I were in the supermarket car park together. The nurse on the call explained Imogen had three autoantibodies and that meant she was going to get type 1 diabetes at some point in the future. Imogen was so calm about it – she said to me, 'That's OK, can we go and get some chocolate now?'

In early 2023, I noticed my son Thomas was getting thinner at first but, being 14 years old, we thought he was having a growth spurt. However, soon after we noticed he was incredibly thirsty, tired and was frequently visiting the toilet – the 4Ts. After a visit to the GP, his diagnosis of type 1 diabetes was confirmed and we were sent to the hospital where his blood glucose levels were very high, with ketones present. 

"I remember thinking to myself that week, if I could give him my pancreas, I would – it’s what any parent would think. A few weeks later, the doctor said if my son’s diabetes had gone undetected any longer, he could have become seriously unwell."

Just 18 months later, I noticed my husband had similar symptoms but less obvious. I suspected that he had diabetes too and it took a little time to convince him to visit the GP – he was diagnosed at the age of 50. 

In 2021, when Jack was 5 years old, we noticed he appeared extremely tired. We thought, 'he’s just started school so he’s likely just tired from all the playing and learning'.

I have type 1 diabetes myself – I was diagnosed aged 8. My dad also had type 1 diabetes – he was diagnosed aged 2. So, I wanted to get Jack checked.

I took him to the GP and they did a HbA1c test, which came back normal. I felt relieved - maybe I was worrying for nothing?

Fast forward eight or so months later, Jack had started complaining of tummy ache on and off and was still very tired and lethargic. I convinced Jack to let me check his glucose on my blood glucose meter before his evening meal. It was 10.2 mmol/L.

The next day, he was seen at our local hospital. His glucose levels were up and down, but not consistently high. That’s when he had a blood test to check for type 1 diabetes autoantibodies.

Autoantibodies are proteins used by the immune system to earmark insulin-producing cells for destruction. A simple blood test can detect if someone has autoantibodies, and how many. When there are two or more autoantibodies, the immune system’s attack has already started, and it’s almost certain someone will develop type 1 diabetes in their lifetime. This phase – before symptoms appear or insulin treatment is needed – is known as early-stage type 1 diabetes.

We got the results back a month or so later and found out he had tested positive for three autoantibodies. That’s how we discovered Jack was in the early stages of type 1 diabetes.

Monitoring blood glucose levels

We were referred to a clinic in Oxford that specialised in early-stage type 1 diabetes. Jack had check-ups every 3 months to check his blood glucose levels and monitor any progression. It was nice to know that Jack was being reviewed and there was some kind of plan in place for if things changed – that made us feel a lot better.

Jack unfortunately became unwell at the end of March 2024 with a fever and a rash, and his younger brother had seen Jack drinking from the tap in the bathroom. We followed the team’s advice and tested Jack’s blood glucose levels. They were really high.

We got in touch with the diabetes team and they told us Jack has progressed to the full onset of type 1 diabetes. He was then started on low doses of insulin.

Diabetes wasn’t something that had ever been on my radar, until my second pregnancy changed that.

My first pregnancy in 2016 was straightforward. However, when I was pregnant again in 2023, I went for a routine appointment at 24 weeks at St Marys Hospital in Manchester and was told that there was glucose in my urine sample. 

This led to my midwife referring me for a gestational diabetes test. I remember getting the results and being told my blood sugars were really high, but at that point I didn't understand what that meant or the implications.

I quickly saw a dietitian and, at first, was told to manage my blood sugars with my diet, but despite being extremely strict with what I was eating my blood sugars were still very high. Shortly after this, I was started on insulin injections. A consultant then asked if she could run some tests for type 1 diabetes.

During my first pregnancy in 2020, I had routine screening for gestational diabetes which caught high blood sugar levels. My doctors decided to investigate further and tested me for type 1 diabetes autoantibodies.

What are type 1 diabetes autoantibodies?

Autoantibodies are proteins used by the immune system to attack insulin-producing cells. A blood test can detect if someone has autoantibodies, and how many. When there are two or more autoantibodies, the immune system’s destruction of beta cells has already started, and it’s almost certain someone will fully develop type 1 diabetes in their lifetime. This hidden phase – before symptoms appear or insulin treatment is needed – is called early-stage type 1 diabetes.

The results showed I had two autoantibodies. The doctors explained this meant I was very likely to progress to a full type 1 diabetes diagnosis at some point. But they couldn’t tell me whether that would happen in six months or 10 years.

It was a huge shock – I hadn’t expected anything to come from that test.

The uncertainty was the part I found most stressful. I didn’t know what was happening underneath the surface. I’m still trying to get my head around the fact that type 1 diabetes will eventually happen.