World Diabetes Day special: Why I tested my children for type 1 diabetes?

Would I like to know if my children are at risk of developing type 1 diabetes? I have worked in the diabetes community since 2008, I have met many good people in the community, have made many friends along the way and have been involved with, or led, several education and awareness campaigns. 

Along the way, I have learned a lot about both type 1 and 2 diabetes and the incredible burden these conditions have on people’s lives.

We’re talking about type 1 diabetes where you need to take daily insulin injections to survive, because the body’s immune system has mistakenly attacked the insulin-producing beta cells in the pancreas. It is a condition that we all know places the burden of a daily challenge on those who have it, creating the need to constantly balance glucose levels from being too low that they can cause a life-threatening hypo to being too high and wreaking havoc across the body’s organs causing potentially long-term damage or sending you into a life-threatening DKA episode.

In terms of the risk, three in 1,000 children are at high risk of getting type 1 diabetes.

While that feels low, there is always that lingering fear that yours could be one of the three. So, would I want to be pre-warned about my children potentially developing type 1 diabetes?

It would avoid the chance of them being misdiagnosed and ultimately dying because a doctor told us they had flu or an eating disorder instead. It would allow us to be prepared when the condition, as predicted, may eventually come along, to already start monitoring glucose levels, to start acquiring the knowledge and start to understand the impact different food has on glucose levels.

When you make the arguments, which are compelling, the answer is simple.

But to answer that question you also need to consider the baggage that comes with such a decision. To find out currently, you would need to enrol into The ELSA Study for children or the T1DRA Study for adults. They both offer screening for type 1 diabetes. Enrolling is fairly easy, you then get a pack through the post containing all that you need to carry out a test.

The test does involve extracting a decent amount of blood from your children’s fingers which wasn’t easy and is the reason why I was only able to test two out of three of my tribe. Aside from this mild trauma, the real question you need to wrestle with, is: ‘can you handle living with the fact that your child might develop type 1 diabetes at any point in the future, or indeed that they might not?’. Also, there is also some apprehension to deal with when it comes to waiting for the test results to come through to consider.

I enrolled my children into the ELSA study, where they test for antibodies or protein markers in the blood because antibodies are markers of risk of type 1 diabetes. The researchers are testing for four antibodies for the study.

The higher the number of antibodies, the greater the risk of them developing type 1 diabetes in the future. In children with two of these antibodies, within the next 10 years, three in four of them will go on to develop symptoms of type 1 diabetes. For children who have one of these antibodies present, their risk is not as high, but they could develop more antibodies over time. For children who do not have any of these antibodies, this means they are currently at low risk of developing type 1 diabetes, but they could still develop antibodies in the future.

I did the right thing, I used science to predict my children’s future health risks. As a parent, why wouldn’t you want to know?

This is my story with type 1 diabetes screening. I would recommend it because it’s better to be prepared, especially when the future of your children depends on it.