Claire’s story: Removing the ‘what ifs’ around my children’s risk of type 1 diabetes

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.

In our case we were very lucky to have the knowledge and support around us to prepare well for our son’s diagnosis at the time. Family experience and my own mother who is a retired Diabetes Specialist Nurse was a fantastic help. She helps a lot with Enda’s care and is a massive support, especially when I am at work. I know if our results indicate Aodhan or Cillian’s are at risk of type 1 diabetes, we have a great support network to help us.

As part of the ELSA study, parents or carers will receive information and resources should they receive a positive result – this will be a brilliant support to help them prepare for everything a type 1 diabetes diagnosis can involve.

We can strive to make things better

My advice to any parents or carers out there is to absolutely take part in the ELSA study and know that, should they have a positive result, it will not hold their child(ren) back. 

I have always lived a healthy life with my diabetes and always encouraged to never let it stop me. I have maintained strong attendance at school and work and have always participated in team sports and tried to maintain that normal lifestyle.

Keep your young ones involved in anything they want to do and don’t be afraid. Enda is playing Gaelic, soccer, and takes part in swimming. He also has an assistant in school who supports his care at sporting events and trips. Enda never lets diabetes hold him back and I encourage him to say yes to absolutely everything. Diabetes just has to fit into our life!

"My goal as a mum of a child with type 1 diabetes is to educate Enda as much as possible so that he will be able to independently manage his diabetes. As I said, education is empowerment. Enda is already learning so much from identifying his own hypo/hyper signs, treating these, and knowing how to do his own finger pricks, pump changes and carb counting. Children really do surprise you with how much they can take on board and also how responsible they can be."

I do have concerns around the lack of funds in Northern Ireland to support adult type 1 diabetes patients to access advanced CGM devices and how this may impact Enda in the future. I hope to see a time in the near future where this type of technology is available to all.

I think one of the most important takeaways is to understand that with diabetes, not every day or week will be the same. We can’t make things perfect all the time and we do face some challenges now and in the future, but involvement in studies like ELSA shows me that we really can strive to make things better.

Find out how your child can take part in the ELSA study