Breakthrough T1D community member Karim Jones shares more about her family’s experience with T1D screening after her daughter was diagnosed.

Thanksgiving week of 2022 is a week I’ll never forget. We had picked out the menu for our family feast, and my 11-year old daughter and I were narrowing down what pies we wanted to make. We both love pie, and I think we had decided on some type of cream pie and a pumpkin one because, even though not all the kids in our family love pumpkin, it was tradition. Little did we know that instead of measuring cups of flour or tablespoons of vanilla, we’d be measuring insulin instead. We never got around to making those pies. That year, as we sat around the Thanksgiving table, having just made out of the hospital in time, we counted blessings and we counted carbs.

Sofia had been sick with all the classic type 1 diabetes (T1D) symptoms. Extreme thirst, weight loss, fruity smelling breath, frequent trips to the bathroom and fatigue. I remember the night we took her in to urgent care, I just laid in bed by her watching her breathe. It was one of the scariest moments of my entire life. As we took her skeletal-looking body into the building, I was asked if we wanted a wheelchair because she could barely walk. So many memories that morning that I wish weren’t ours.

After reading her blood sugar and rushing her to the emergency room to be stabilized, we were transferred to Primary Children’s Hospital via ambulance, which was the first time we had ever heard of diabetic ketoacidosis (DKA). It took me a second to realize that that also meant our daughter had diabetes. We very quickly learned that everything we thought we knew about the disease was a minuscule amount of what it actually entailed. We received a crash course on counting carbs, managing high and low blood sugars, finger pricking and perhaps most daunting: administering her shots. To say we were overwhelmed is putting it lightly. Almost in passing, we heard that it was possible to have the rest of our family screened for T1D autoantibodies to see if any our other children carried it. We had so much on our plate, but right away we knew we wanted to find out more.

The first few weeks, we felt like we were drowning. Every hour, it seemed, we were running a marathon, and I’ve never been much of a runner. I remember asking myself, “How do we take care of her AND our three other children?” It seemed absolutely impossible. We felt all the feelings, while mostly functioning at a simmering level of anger and fear. At the back of my mind, I kept thinking what it would be like to have another child diagnosed as well.

Diabetes blindsided us. With no known history of the disease in our families, it felt like it came out of nowhere. Time and time again, we look back and the signs were there. They’d been there for a little while, actually. So now that we knew the signs, I was constantly feeling vigilant. Up until we received the results of our screening, I was always on the alert. If someone said they were thirsty, I’d ask, “HOW thirsty? Like, normal thirsty or thirsty thirsty?” Every headache, irritable moment or appearance of fatigue would send me into a spiral.

We knew that living in this space of un-knowing was not for us. I am a firm believer that fear often goes hand in hand with lack of knowledge. So learning as much as we could about the disease and finding answers to our questions made things feel less scary. The fear of having another member of our family go through what Sofia did, to get as sick as she did, was scary enough to push us to get screened. My husband and I didn’t want to make the decision alone, though, so we asked our kids if this was something they also wanted to do.

After seeing Sofia manage her diabetes for a few months, her younger siblings felt less scared about a possible positive result. We discussed what the procedure would be like and the advantages of being able to catch the diagnosis ahead of time. We talked about how diabetes actually occurs in three stages, and that if any of us happened to be in the second stage, there were clinical trials we might qualify for that could delay the onset of it by several years. So with their permission, I went ahead and made appointments for us through TrialNet at Primary Children’s Hospital. We were able to get on the schedule relatively quickly and at no cost to us. The screening is free for those who have a family member with diabetes.

The screening was very easy and didn’t take long at all! After going through the paperwork, the kids were able to get some numbing creme on their arms and then had their blood drawn. One by one, we each took our turn, and it broke my heart a little to see how brave they were all being. As we drove away, I knew it was the right decision for our family, but it didn’t mean I wasn’t also very nervous about the results. We left the hospital feeling like, if the results were positive, we would not be left to our own devices carrying a ticking time bomb. We felt like we would have support and hopefully participate in a trial that could delay the onset.

The next couple of weeks were definitely nerve wracking as we awaited our results. We came up with pep talks of how we’d talk to our kids. We prepared mentally for what it might mean to have another child, or children, also test positive. The diabetes community is an incredible one, and we had become good friends with a family who have two children with T1D. They gave us so much hope because their kids were involved in so many activities, and they didn’t let diabetes slow them down. Seeing them, I knew it could be done, that it didn’t have to be scary, and that our family did not have to be run by this disease.

Three weeks after our tests, we learned that all our tests were negative for T1D autoantibodies. While I would say I was mostly extremely relieved, I also felt a little sadness for our daughter because there was a chance she’d be doing this alone. But I quickly remembered that she has not had to do any of this alone.

So what do our results mean? While there’s a fair chance that no one else in our family develops diabetes, the chances are not zero. So we will continue to keep an eye out, especially if we start noticing the same symptoms Sofia had. But, if there is a next time, we won’t feel so blindsided. We would be prepared. We’d be more prepared mentally and do all the learning we could so that diabetes would feel less scary should it come around again.

Learn more about your risk-screening options through T1Detect, Breakthrough T1D’s education and awareness program.

Continue following Karim and Sofia’s T1D story @karimjones on Instagram!