If you had had the chance to find out if and when your child would be diagnosed with type 1 diabetes, would you have? That’s essentially the question we’re facing from the research team at the hospital where we take Kaitlyn every three months. It’s a question they’ve been asking us for years: Do we want to participate in the Trialnet study and have our other children tested for the autoantibodies that may help predict type 1 diabetes risk?
I have five children, including Kaitlyn, and as we all know, it’s much more likely that my other children will also get diabetes than if they did not have a sister already diagnosed. In fact, they are 15 times more likely to develop diabetes. So far, Kaitlyn and my nephew James are the only ones in our family who have been diagnosed, but I know several families with two or three children with the disease. It feels like a ticking time bomb, just waiting for the next person in our family to show symptoms.
So I find myself wondering if I want to find out which of the kids have the autoantibody. So far, the answer for me has been… not yet. They say that even if they show markers of the antibodies, they might not necessarily get diabetes right away or at all; it’s just much more likely. And even if the autoantibodies are not present, a person can still develop them later. I think it would drive me crazy knowing that one of my children is more likely to develop type 1 diabetes but not really having any power to do anything about it.
There’s a nagging feeling in the back of my mind, though, reminding me that this research study is being completed to help find out more about type 1 diabetes and how to prevent it. It’s not just a study to give moms a nervous breakdown! I feel an obligation to help with the research in any way that I can, especially because so many people have sacrificed in the past so that we can have the technology we have today. If it were not for the medical advances already made in this field, I wouldn’t have my Kaitlyn today.
So that’s my dilemma: Do we risk worry and heartache and more testing for the sake of helping to improve the lives of type 1 patients in the future? It’s a choice we each must make. You can find out more about the research study by visiting Trialnet.org.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.