Connor was diagnosed around three and half years ago, just one week after the schools closed due to the Covid pandemic. Due to the unknown around Covid and everything that come with his sudden diagnosis, this was honestly one of the scariest times in my life.

As soon as he was discharged, he had to do 12 weeks of shielding – meaning no visitors and no support. At that time, we only ever had one face-to-face with a diabetic nurse. Our paediatric diabetic nursing team in Braid Valley Hospital in Ballymena were and continue to be absolutely amazing. They kept in touch multiple times a day and all classes and appointments were done via Zoom instead. Thankfully, we didn’t miss out on any care due to the pandemic – everything was virtual and they did what they could. We also had regular phone appointments with the team counsellor who was a saviour during that time. Connor's nurse knows us better than anyone and we would be absolutely lost without our team.

We used lockdown to our advantage and changed our home-schooling to all things diabetes. He was only six and we learnt all about carb counting, healthy eating, injecting, the science behind his condition, and lots more.

Type 1 diabetes is something I have known all my life, having been diagnosed myself at the age of three and surrounded by many other family members who are also living with the condition. My older sister who was aged seven at the time, was diagnosed three years prior. For me it felt a little less scary as my family already had experience of this however that is not always the case for many parents or carers. My sister’s diagnosis was their first encounter and came as quite a shock. Many years down the line my younger brother was also diagnosed with type 1 diabetes, at the age of 20.

Our son Enda received his diagnosis at the age of three. In his case he displayed many of the key symptoms associated with diabetes, most noticeably he started getting very thirsty, tired and was losing some weight. With our family history, we were very alert to the signs and were able to test his blood sugar levels with my blood glucose meter – his levels were sitting at 21. Not everyone may be as aware of the 4T’s and if symptoms go unnoticed this can be incredibly dangerous, leading to possible diabetic ketoacidosis (DKA), which can be fatal.  

"Although I always knew the risks of our children having type 1 diabetes, it was still a massive shock for us all and we were very emotional around the time of his diagnosis. I think that living with the condition myself, I knew the effort it takes on a daily basis – that emotional and physical load you have in managing your diabetes well. I didn’t want that added strain for my child."

Removing the ‘what ifs’

Recently my diabetes nurse Pauline reached out to me, explaining that the ELSA study was expanding to Northern Ireland. Knowing that there was a study that could identify the risk of my other two sons developing type 1 diabetes in the future seemed almost unbelievable. I have always been extremely passionate about helping research where possible and I knew this study could have such an incredible impact and help the lives of so many families.

Through ELSA, parents or carers just like me can remove the ‘what ifs’ and possibly even put their mind at ease. Having determined results as to whether your child is at risk of developing type 1 diabetes in their lifetime, means that you can equip you and your family with the knowledge to identify signs and symptoms and lean on resources and support when it presents. Education really is empowering in helping manage long-term conditions, like diabetes.

It's studies just like this that give me great hope in finding a solution for diabetes – research is truly incredible.

I was diagnosed at 16 which threw my social life and school studies into chaos! Back then it was a case of mixing your own long and short-acting insulin and eating set amounts each day. Luckily it’s much easier now with tech like the Freestyle Libre and carb counting. I wish I’d have had access to the support back then that’s available now.

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My reaction to diagnosis was pretty much shock! Back then there wasn't as much information on what type 1 diabetes was. I remember being given lots of leaflets and having to weigh food a lot. This was back before carb counting appeared so it was a real lifestyle change. The local hospital team were great but it was quite a lonely experience managing it on my own without any other type 1 diabetics in my social circle.

"I remember feeling quite anxious, especially when being out, about needing to carry snacks, blood kit and medication as before I'd been able just to leave the house with nothing more than a tenner in my pocket!"
 

I was diagnosed with type 2 diabetes aged 21, following a difficult childhood. From a young age I developed problems with disordered eating, then I was told by my healthcare team at age 13 that I was developing polycystic ovary syndrome (PCOS) which has since been proven to be triggered by my being insulin resistant. 

Following my diagnosis of type 2 I was put onto metformin. I then made dietary changes and lost weight and went into remission for a few years in my twenties.

But my personal circumstances became very challenging and I restarted metformin treatment. My disordered eating then worsened, so I subsequently took part in two weight loss management programmes, before I was referred to have bariatric (weight loss) surgery in 2013.  

As a young woman living with the condition Katie, who works as a junior magazine editor, had been struggling to find people whose experiences matched hers. Key to that seemed to be finding someone in her own age group.

Katie, who is now 25 and lives in Camden, North London, was diagnosed with type 1 diabetes when she had just turned 20 in 2018. Alongside the shock of the diagnosis came a feeling of dislocation.

She says:

“I remember being out with my friends and thinking ‘I'm different now, I wonder if I'll ever feel like part of the group again’?”

Prior to her diagnosis, Katie saw herself as a typical young woman. She was studying at the University of St Andrew’s, making friends and enjoying university life.

Then she started to experience all the symptoms of type 1 diabetes, including incredible thirst, weight loss combined with a ravenous hunger and tiredness.

“I just wasn't myself and I knew it,” she says, “But for a time I kept finding reasons to put individual symptoms down to working too hard or training too hard or not getting enough sleep.”

Then one night Katie had a lightbulb moment - her younger brother had been diagnosed with type 1 diabetes many years earlier at the age of four and she saw the similarities between what she was experiencing and his condition. After a brief bit of online research she did a finger prick test at home and the result sent her straight to hospital.