How has autoimmune T1D changed your son’s life?

Being diagnosed with autoimmune T1D means that, in an instant, you have to relearn how to live for the rest of your life. From that moment on, counting carbs, needles and finger pokes became part of his daily routine. He’s eight years old now and, as he gets older, we continue to discover new challenges. In everyday situations, like school, sports and birthday parties, he often has to do things differently from the other kids. Despite our best efforts, low blood sugars still happen and require him to pause, rest and wait until he feels well enough to continue. We often have to wake him up in the middle of the night to eat and then he heads to school the next morning feeling tired, which impacts his learning.

How has it changed your life at home and at work?

As a family we must plan for everything. Even if we have to run a quick errand, we pack up all of his stuff because his condition can change in an instant. Everything goes to school with him, labelled and organized, with fast sugars in every pocket, backpack and desk. There are also lifesaving medications throughout the school. He’s like a duck floating on the water with all the other ducks, while my husband and I are underneath, frantically paddling to keep him afloat with a semblance of normalcy.

We worry about how he feels and how hard it is on him. Honestly, it’s something I think about all day, every day, regardless of what I’m doing. I have my phone beside me all the time so I can watch his blood sugars and, if an alarm goes off, even if I’m in a meeting, I have to address it right away. My employer understands that if my camera turns off or if I log off abruptly, I’m dealing with an emergency. I’m in constant communication with his school, probably sending many messages to him, his teacher or the nurse every day. Flexibility at work has been essential.

Would you consider screening your other child for autoimmune T1D?

Early knowledge is a benefit for almost any medical condition. I’d consider screening to reduce the risk of complications or to allow more time to get better educated and prepared. I’ve also talked to my sisters about screening their kids.

Dr. Sarah Linklater, chief scientific officer at Breakthrough T1D, describes T1D as “a really challenging disease to manage” because there are many factors that affect blood sugar and each day is different. People with T1D must make dozens of extra decisions every day related to their disease.

What often surprises people is that most of those diagnosed with T1D are adults. In 85 per cent to 90 per cent of cases, the diagnosis comes out of nowhere, with no family history. However, family history is relevant. Individuals with a first-degree relative with T1D have an approximately 15-times higher risk of developing T1D compared to the general population.¹

How can screening for autoimmune T1D improve outcomes?

Screening and education can reduce the risk of dangerous complications like diabetic ketoacidosis (DKA) at diagnosis. This is crucial because people who don’t experience DKA are generally healthier throughout their lives. Additionally, screening gives patients and their families time to prepare mentally and emotionally, as well as time to change their behaviours in ways that delay the disease from progressing. At Breakthrough T1D, we’re funding research on how to monitor people and scale screening across the health-care systems.