The lack of information available at the time motivated me to later get involved with the UK Islet Autoantibody Registry. I’m part of the project team, and can bring my dual perspective of having a child who was diagnosed late and was very unwell with DKA, and a child whose risk has been identified much earlier. So, I can see both the benefits and the challenges of early detection.

The Registry will give researchers the data they need to be able to understand more about the development of type 1 diabetes. And to explore the best ways to support people at risk psychologically and to create a proper care pathway for them. For families like ours, it will be a place to go for trusted information and peer support.

"Crucially, it will also be a place to find out about opportunities to take part in trials for new treatments – ones that could keep holding off the full development of type 1 diabetes for as long as possible."

With studies like ELSA now screening more widely for autoantibodies, there’s going to be more people identified in the early stages of type 1 diabetes. So, the Registry will be hugely beneficial.

My experience sparked an interest in the intersection between physical health and mental well-being, especially in the context of comorbid conditions. I went on to complete a first-class honours degree in criminology and am now pursuing a master’s degree in psychology at the University of Sussex.

My dream is to undertake a PhD focusing on the psychological impact of a type 1 diabetes diagnosis. I want to research the cohort I relate to most, many of whom navigated this life-altering diagnosis in isolation during the pandemic. There is so much to unpack – how diagnoses can affect identity and self-esteem, how individuals adjust to life with a chronic condition, struggle with weight issues, and deal with the internal and external stigmas they may face.

I know there will be many others like me, diagnosed during the pandemic, in lockdown, away from friends, with anxiety through the roof. I feel this is more than just an academic interest; it’s a deeply personal passion that I’m truly committed to.

Moving forward

I look back now and realise that everything I hated, the injections, the numbers, the grief, the weight gain, the isolation, led me here. To a place where I am working towards something I care about deeply. I’m committed to sharing this journey as widely as possible, so no one has to feel as lost as I once did.

This is something I want to spread awareness about, not just for myself, but for every newly diagnosed person sitting in a hospital room, hearing the words, “You have type 1 diabetes”, and wondering what comes next.

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 Support Forum – to connect with others affected by diabetes (Minimum age 13). For more information, see 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.

In retrospect, managing diabetes is not just about insulin and diet; it’s about understanding the full scope of the condition and taking proactive steps to protect your long-term health. For years, I underestimated how serious it was and avoided confronting the reality of living with diabetes. The journey has been long, and while the technology and medical care I now receive have drastically improved my quality of life, I still deal with the consequences of those early years of not managing the condition well.

The lesson here is clear: diabetes doesn't take a back seat. It is relentless and unforgiving if left unchecked. Looking back, I realise that managing your diabetes well isn't just about avoiding minor inconveniences. It can literally save your life and prevent irreversible damage to your organs. If you're living with diabetes, it's essential to stay vigilant because once you hit that point of no return, like I did, there’s no easy way out.

Life after my transplant

Nine years after my transplant, I’m living a full life, raising my five-year-old son who is my motivation to keep going, to stay healthy, and to honour the gift of life that my donor gave me.

Having gone through so much, I now want to share my story with others. Diabetes is a relentless condition, and my journey proves just how serious the consequences can be. I hope that by raising awareness, particularly among young people, I can help someone else avoid going through what I’ve experienced.

Every day is a new chance, and I’m determined to keep living fully – for myself, for my son, and for Sally.

It is a lot to constantly be thinking about when my next meal will be, what type of exercise I’ll be doing, how many units of insulin to take, and more. There is so much more to think about. Going out for meals can be challenging as I have to guess the carbs and might get this wrong. As many others living with diabetes will know, I can’t just leave the house without ensuring I have my diabetes supplies.

There is also so much more to consider when going on holiday – ensuring I have a letter from my doctor and that I’ve packed all the necessary supplies. It’s the mental load that comes with the condition, always having to think about it, which is tough.

As a family, my husband and daughters have learned exactly what to do when I'm having a hypo, always keeping my trusty apple juice ready. My husband often checks that I have supplies before we leave the house. Their support makes living with type 1 diabetes a bit easier. My young daughters are curious and much more aware of the condition than I was before being diagnosed. I'm thankful to all my family for their unwavering support.

One of the big challenges I faced since my diagnosis was trying for another baby. I wanted my daughter to have a sibling but was terrified and clueless about what this would mean for me. Learning as much as I could and talking to professionals calmed my mind greatly.

I entered the pregnancy prepared and informed, and those nine months saw my best glucose management ever. Thankfully, my pregnancy was straightforward, and my second beautiful daughter was born in January 2020, just before the pandemic hit. Another blessing. I share my story to highlight how life can change overnight. But it's how we choose to look at our new normal that matters.

"I’ve shifted my mindset from “Why me?” to “What can I do to make the best of this condition?” I became more active, more mindful of my nutrition, and ran my first half marathon last year. I'm also currently taking a nutrition course outside of work."

My message is that we all have the strength to make the best of the hand we're dealt. It's up to us to have the right mindset.

Walking for multiple days just following footpaths on a map and then camping is both mentally and physically tough. Adding the need to manage blood sugars on top of that doesn’t make it any easier.  

For me, the middle of the walk is always the toughest part - when the enthusiasm has died down and the end still feels ages away. But just keep going, one foot in front of the other is all it takes.  

Communication with your group is essential – hopefully, you feel comfortable and relaxed with the other people in your group. Before the expedition, I made my group aware that I have type 1 and what to do in emergency situations. It was helpful for me to have that talk so if I got into difficulties, I knew that they knew how to help me.  

During the expedition, I felt able to ask if I needed to sit down for a minute to check my blood sugar, treat a hypo, or just take the weight off my back for a couple of minutes. I think everyone appreciated having a rest before continuing with the day. 

So don’t give up! One of the best feelings ever is getting to the meeting point at the end knowing what it’s taken to get there!