When I was diagnosed with type 1 at 13, I had no warning. I ended up quite poorly in hospital with diabetic ketoacidosis (DKA).

"But being part of the ELSA study has helped us as a family to prepare for the future in a way we never expected. Knowing what’s coming – rather than being taken by surprise – has made an enormous difference to our confidence and peace of mind."

When Imogen’s diagnosis arrives, we hope that having this awareness will reduce her chances of experiencing DKA and the added trauma that comes from a sudden illness.

It also gave me the opportunity to ask the doctors who were monitoring Imogen if there was anything – early treatments or research trials – that she could do. That’s when teplizumab was first mentioned. The doctor told me it had been shown to delay the need for insulin treatment for around three years, but it wasn’t approved in the UK.

It was a few months later when the doctor mentioned it again. Imogen was at the right stage where teplizumab could be used and there was potential she could be offered it through an access route managed by the drug company. 
We spoke to Imogen about it a lot beforehand. And I asked other family members and friends to ask her about it too – to be reassured Imogen wasn’t just telling me what she thought I wanted to hear. She told everyone she wanted to go ahead with the treatment and was always very cool-headed.  

Because I’ve got lived experience of diabetes, I felt confident this was the best thing we could do for Imogen. Back in the 1990s when I was diagnosed if someone had said, ‘You could be given this and it will delay you getting type 1 diabetes for up to three years,’ I’d have bitten their hand off.

"For Imogen, a huge motivator was knowing she could not only improve her own life but also help make things better for other children in the future. I think that’s what kept her moving forward through all the tests and hard parts." 

We were relieved to have caught Jack’s full type 1 diagnosis when we did and prevented a hospital admission for him. His diagnosis almost felt like a ticking time bomb - not a matter of if, but when it would happen. Of course, we didn’t want Jack to get full-blown type 1 diabetes, but we also didn’t want him to end up very poorly in diabetic ketoacidosis (DKA).

They say knowledge is power. However, knowing that your child has positive antibodies but not knowing when the full diagnosis will happen is hard - it could be months or could be years! Knowing we had support and follow up from the team in Oxford was amazing and definitely helped us.

"We know we were really lucky to have access to this. Across the UK there isn’t the same level of care everywhere for people with early-stage type 1 diabetes. That’s why we think Diabetes UK’s funding for the UK Islet Autoantibody Registry is so important."

The Registry will allow researchers to track and monitor everyone with autoantibodies as they progress towards full-blown type 1 diabetes. That means others can get proactive monitoring, like Jack did, to pick-up when they need to start on insulin.

It will also help to recruit people with autoantibodies to clinical trials testing treatments to delay or possibly prevent the full onset of type 1 diabetes. And it will be crucial to help researchers better understand the early stages of type 1 development, and create more personalised care approaches and public health policies that support early intervention and education.

Since Jack has started insulin, his family, friends and school staff have mentioned how much more energy he has. He is our little super star and has been so brave and resilient.

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Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free forum – to connect with others affected by diabetes (minimum age 13). For more information, see our forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.

I feel very lucky to have been given the opportunity to receive teplizumab, as I know only three adults in the UK have received it so far. I’m incredibly grateful to the amazing team at the Manchester Royal Infirmary that made this a possibility for me.

My hopes now are to avoid insulin therapy for as long as possible. It will be interesting to see how long I am blessed with this additional insulin-free time, which I am not taking for granted. I will try and utilise this by sharing my experiences. Hopefully, I can help others who find themselves in the same position as I was.

I understand that some people would prefer to get on with life and wouldn’t want the anxiety of knowing that they are developing type 1 diabetes. However, having had my type 1 diabetes uncovered at an early stage, I have been blessed with extra time to learn, prepare, and try to understand what being insulin dependent will mean.

I really cannot imagine how overwhelming it must be for someone to suddenly be told that they have ‘full’ type 1 diabetes. Their whole life will have changed in an instant and, whilst trying to process this, they need to also immediately adapt to a life of insulin therapy. It must be hard enough to navigate this as an adult; I can't even begin to imagine the stress that it must bring to parents of young children who are diagnosed.

Thanks to the ELSA study, my eldest daughter has already been tested for the type 1 diabetes autoantibodies, and thankfully she doesn’t have any. I’ll get my youngest tested once she’s old enough. If teplizumab becomes available for children on the NHS, I’d absolutely want them to have it if they needed it.

Changing my perspective

Before my diagnosis, I’m embarrassed to say, I didn’t understand diabetes at all. All I knew is that it was something to do with blood sugar. I didn’t know there were different types, or that type 1 is an autoimmune condition.

This whole experience has completely changed my perspective. It’s made me realise how much stigma and misunderstanding there still is in relation to diabetes. People don’t see the mental and physical load of living with an autoimmune condition and that must really chip away at those living with it.

It became clear to me very quickly that there is an amazing diabetes community out there that supports, listens, educates and uplifts each other.

Although I had early-stage type 1 diabetes, during my pregnancy I needed to start insulin injections and monitor my blood sugars regularly. This is because pregnancy hormones increase the body’s insulin needs, and my pancreas couldn’t keep up. The same happened during my second pregnancy too. But after each birth, I was able to come off insulin.

I became quite obsessive with my blood sugar numbers during my pregnancies. So, I’ve had this taste of what life managing type 1 diabetes is like.

As a child, my diabetes was heavily monitored by my parents. During school years, my mother in particular, was very cautious about everything from packed lunches, school meals and school trips – ensuring I was supported.

As I’ve gotten older, I also feel that one of my biggest blessings was having a parent who also lives with diabetes to guide me. 

When I was younger, I didn’t really dwell too much on my condition. I always think that because I was diagnosed at an age before I made any real friends, the friends I made through primary school already knew me as being diabetic and therefore I didn’t face any hardship – I was just Mya.

The care I received from my paediatric team was nothing short of amazing. I grew up with two main nurses – I still am in contact with one of them to this day – she is one of the main reasons I chose to go into nursing myself. Every appointment, every blood test and every awkward topic, she was always there.

Live every moment as it comes

As I’ve gotten older and gone through puberty and normal teenage changes, my diabetes has definitely changed. At one time, I found myself not wanting my dad’s support and going through a stage where I tried to take it all on myself – I’ve definitely grown out of that stage. 

My transition from paediatrics to adult clinic is one area that I found particularly difficult. This is a particular area I’m really passionate about, advocating for a better transitional care system for young people living with diabetes.

My mindset now is about living every moment as it comes. I can’t predict what my blood sugar will be, I can’t sense if I’m going to experience any issues with my tech, and I can’t control real life. I always just try my best – my diabetes is a fickle thing that pushes me to my limits every day.

How I feel about my diabetes has changed massively over the years and some of this is down to the amazing diabetes community. It’s completely changed my attitude around my condition – I’ve gone from not wanting to talk about it, not wanting to think about it, and definitely not wanting to share it widely with others. 

Now, I’m a complete open book and I will always and forever now advocate for and be part of the diabetes community.

For others in a similar situation to me, I’d say try and be kind to yourself because the world won’t give you that time to stop. Give yourself that time and care and do not be dismissive of the importance of community and charities that are there to help you. I only wish I’d been involved with Diabetes UK sooner.