Why Type 1 Diabetes Screening Matters: One Family’s Story of Hope, Action, and Empowerment

For many families, the idea of screening a child for Type 1 Diabetes (T1D) feels overwhelming. What if the results come back positive? What if it sets a path of fear? What if we don’t want to know? These are valid fears, and I held each of them in my heart when I chose to screen my children.

But what I learned through this experience is simple: knowledge is power — and whatever the results would be or could be, I’d be empowered to take steps that can help.

Screening can be one of the most empowering resources we have as parents when navigating the possibility of T1D. Screening also supports vital research that brings us closer to prevention and a cure. Participating in screening not only benefits individual families but also contributes to a growing research registry that is shaping the future of T1D prevention. In fact, every person who participates in screening helps scientists better understand the early stages of T1D and supports the development of therapies like TZIELD®.

Why We Chose Screening: Our Family’s Story

As a registered dietitian and someone who’s lived with Type 1 Diabetes for more than 30 years, I’ve always believed in the power of research and early intervention. I knew about TrialNet, an international network dedicated to the early detection and prevention of T1D, and how it offered free screening for relatives of people with Type 1.

After relocating from Chicago to Columbus, OH, in 2016, I was settling in with a new endocrinologist when I asked about having my children screened. They were young, and while a blood draw was far from their idea of fun, we showed up at a pediatric endocrinology office and followed through with the process. When the results came back negative, I remember feeling a wave of relief. I was grateful to pause the worry, at least for a while.

Because no antibodies were found, TrialNet did not offer annual follow-up testing (these standards have changed and continue to change due to funding), and I assumed our screening journey had ended there. But in 2024, during a Breakthrough T1D (formerly JDRF) walk, we saw a TrialNet booth offering on-the-spot screening. This time, my kids were 9 and 10, old enough to understand. I asked them gently, “Would you like to be screened for early markers of T1D?” It was a small question carrying a big weight. They only wanted to know if it would be a blood draw or a finger prick (funny enough, they dread the finger pricks more), and then they agreed.

Weeks later, I missed a call on a Friday that would change everything. On Saturday morning, I woke up to a voicemail: one of my kids had tested positive for autoantibodies. My heart sank. I was the only one awake, and I sat with my grief alone, crying into a pillow, trying to process it. The mom guilt was instant and intense – like I had somehow failed my daughter. My eyes water, just recalling this moment.

I immediately called TrialNet back and then reached out to my mom and sister. Waiting for a reply felt endless. Thankfully, a nurse from Pittsburgh returned my call that very afternoon. She explained the risks, clarified that it was my daughter Teagan’s result, and shared that Teagan would now be eligible for their monitoring study and follow-up testing in 12 months.

When we went to Nationwide Children’s Hospital for her follow-up, I was flooded with memories. It was the same hospital where I was diagnosed in 1991. Walking those halls again, this time holding my daughter’s hand, was surreal. In the elevator, I looked at her and said, “It just feels like everything is going to be okay.”

And then we waited. For weeks.

Random moments would catch me off guard — while at work, out to dinner with friends, running errands — I’d wonder: what are Teagan’s results? I tried to stay grounded, not to let the unknown steal my presence, but the waiting was hard.

Finally, we got the news. TrialNet had confirmed the follow-up results: no antibodies. This outcome is rare but not impossible. And for the first time in a while, we could exhale.

The Emotional Terrain of Screening

There is nothing light about the decision to screen. Parents may fear what the results will bring, worry about insurance implications, or feel unsure about burdening their child with “what-ifs.”

But consider the flip side. Over 85% of new diagnoses happen in children with no family history, and symptoms can go unnoticed until diabetic ketoacidosis (DKA) sets in. Screening can drastically reduce the risk of a traumatic diagnosis. According to TrialNet, children identified through screening have a 95% lower risk of presenting with DKA compared to those identified at the time of diagnosis.

For me, knowing meant I could take action — whether that meant modifying lifestyle habits, preparing emotionally, or enrolling in prevention trials. I arranged for my daughter to meet with a counselor to process her feelings before, during, and after screening. The emotional weight of health uncertainty, especially with a parent living with T1D, is real, and I wanted her to feel supported. I also looped in our integrative pediatrician, who recommended nutrition strategies to help support her immune system. These may seem like small interventions, but they felt meaningful. Supporting the immune system through targeted food choices, stress reduction, and nutrient repletion can make a difference, and it’s a piece of autoimmune care that deserves more attention. According to research from the American Diabetes Association, psychological stress and poor diet may influence immune function and inflammation, factors relevant to autoimmune onset (ADA, 2021).

What Happens After Screening?

If results are negative:

Families may feel relief but should know it’s not a lifetime guarantee.
TrialNet recommends rescreening every 1–2 years for siblings of someone with type 1, as well as relatives under 18.
Continue fostering immune and metabolic health through strong eating plans, restorative sleep, movement, and emotional well-being.

If results are positive:

Families are guided into the next phase of monitoring to confirm risk and determine trial eligibility.
Children may be eligible to enroll in observational studies or prevention trials, including oral insulin or immune therapies.
A monitoring plan is developed to reduce the likelihood of a sudden diagnosis.

What is TrialNet?

TrialNet is a global network of researchers working to prevent, delay, and treat Type 1 Diabetes. The organization provides free, accessible screening to first- and second-degree relatives of people with T1D. The screening looks for the presence of islet autoantibodies, which indicate the immune system is attacking insulin-producing cells.

Other organizations like Helmsley Charitable Trust and Breakthrough T1D also fund research and offer family resources.

Resources and Support from DiabetesSisters

DiabetesSisters was one of the first communities to offer me connection, comfort, and guidance. When we received Teagan’s positive antibody result, it was through DiabetesSisters that I was guided to a website with information on accessing new clinical trials and the recently FDA-approved TZIELD® (teplizumab), a therapy shown to delay the onset of T1D in high-risk individuals.

This gave us peace of mind and reminded me that we’re not alone in this journey. Having access to communities like DiabetesSisters is a game changer for families navigating the unknown.

How to Talk About Screening with Kids and Family

You don’t need to make screening scary. Here are a few suggestions:

With kids: Use language that gives them agency. “Would you like to know more about your health?” Offer simple choices and describe the process clearly.
With extended family: Share the facts. “This is a screening, not a diagnosis.” Reassure them that this knowledge helps you be proactive, not fearful.
With yourself: Give yourself grace. It’s okay to feel uncertain, anxious, or overwhelmed. You’re doing something powerful for your family.

The Role of Advocacy

Every time a parent screens their child, it contributes to a larger effort to understand and delay or prevent this condition. Screening builds a database for research, helps shape trials, and paves the way for future interventions.

Advocacy can be as simple as:

Talking about your experience with others.
Encouraging relatives to be screened.
Participating in research events or walks.

Screening isn’t about predicting the future — it’s about preparing for it. It’s about giving our children the best chance at long-term health, whether they are antibody-positive or not.

This journey has reminded me that the hardest things we do as parents are often the most meaningful. If sharing our story encourages even one more family to say yes to screening, then this emotional rollercoaster has served a bigger purpose.

Remember, knowing does not mean fearing. It means we have the tools to act, to nourish, to support, and to thrive — together.

Resources:

About the Author: Kelly Schmidt, RD, LDN is a powerhouse in the world of type 1 diabetes and women’s health. Diagnosed with type 1 diabetes in 1991, she brings over 33 years of lived experience to her work—paired with a no-nonsense, functional approach to nutrition. As the founder of T1D Functional Nutrition, Kelly helps individuals with diabetes break free from confusion, prevent complications, and thrive with confidence.

A registered dietitian, strength coach, TEDx speaker, author, and mom of two, Kelly is a respected voice in both clinical and community spaces. She’s been featured in top publications, on television and a keynote speaker for her science-based, person-first strategies that turn overwhelm into action.

Whether she’s speaking on stage, leading a group call, or coaching one-on-one, Kelly combines deep clinical knowledge with real-life grit—empowering her clients to reclaim energy, balance blood sugars, and live boldly on their own terms.

TAGS all types reducing risks Type 1 Diabetes

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Kelly Schmidt Functional Dietitian and Founder of T1D Functional Nutrition

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