Finding out my children's risk of type 1 diabetes: Amanda's story

My younger brother was diagnosed with type 1 diabetes when he was 14 years old, so I’ve grown up with the condition in the family. But when I had my first daughter I wasn’t worried about her developing type 1. My brother has been the only person in our family to have it and my children getting it wasn’t something that crossed my mind.

When Isabella developed the classic symptoms of type 1 diabetes when she was 3 years old, I spotted them right away. We’d been on holiday with my Mum and Dad and I became really concerned and booked an emergency appointment with the GP. They did tests that showed Isabella had ketones and that her sugars were dangerously high. She wasn’t in DKA but was very unwell.

"I could still cry today thinking back to that day she was diagnosed. I was just heartbroken. I ended up seeing a counsellor after a little while because I was stressing about things that could happen in the future, like when she has a boyfriend or how her periods would affect her blood sugars."

Eventually I was able to make myself focus more on what we had to deal with in the moment and not worry so much about the unknowns."

When my son came along, and later my twins, I was more concerned about their chances of developing type 1 diabetes. I thought to myself – I clearly carry a risky gene.

I remember every time my twins weren't perhaps doing so well at toilet training, I’d worry it was a sign of type 1 and I’d prick their fingers to see if their sugars were out of range. I became hyper aware and a little bit obsessed with – has anyone else got it?

I found out about the ELSA study after another Mum posted about it on a type 1 parent group on Facebook. I got in touch with the research team and became a parent advisor on the project. I share my views from a parent’s perspective and it has been really great being involved and lovely to feel listened to. And to know I’ve made a difference to the information that’s shared with parents and children in the study.

It was an easy decision for me to get the kids tested – I wanted the peace of mind of knowing their risk. I went through all the information on the ELSA website with the kids and we talked about what would be involved. They were onboard, and quite happy to take part knowing it was a finger prick blood test and that we’d do it at home.

I filled in the consent forms online and then we got a pack through the post with all the equipment we needed. Everyone washed their hands, and we sat down at the table and just followed the instructions. We all went on a walk later and the kids posted their own tests through the post box.

"We got the results back around three weeks later. I got a text message first and then a letter in the post. I felt eager to know the results, rather than nervous."

We were all so relieved when everyone’s results came back negative and showed they had a low risk of getting type 1 diabetes. Isabella was really pleased too – I don't think she'd wish type 1 on her worst enemy.

I know them being negative doesn’t mean they can’t ever develop type 1, but I know they’re not at high risk right now and it has just helped me relax more. I was dreading the fact type 1 might happen to more of my kids. I’d been thinking, gosh if another of my kids gets it, we’d have to start with injections again, have another lot of carbs to count, more insulin volumes to calculate.

Hope for research and the future

We can only improve medicine and care with research. I think being involved in research, where you can help develop or discover something, is a great thing to do and something to be really proud of.

In the future, I’d like to see type 1 diabetes screening offered to everybody. I think it's a great thing to know your child’s risk. The screening could happen at the same time as some childhood vaccinations, for example, and be sucked into a visit that parents and children already have.

99% of parents will get a negative result. I understand that some parents would rather not know and worry about a diagnosis if it happens. But knowing can at least take the shock of a diagnosis away and help families prepare for it. You can go away and do your research and become more knowledgeable about type 1 and what’s involved, rather than it all being dropped on your lap overnight. And you’d know what symptoms to look out for so you’re hopefully going to catch it before your child gets too poorly.