Why early detection is so important for type 1 diabetes

Did you know anyone can be diagnosed with type 1 diabetes (T1D), even adults? Although it was long considered a disease that started in childhood or adolescence, nearly half of new T1D diagnoses are among adults. And misconceptions about the disease can result in people being misdiagnosed with type 2 diabetes or experiencing serious complications at diagnosis.

If you have a family history of T1D, or if you would like to take a more proactive approach to understanding your health, you should know that you have options to detect T1D early through screening.

The leading global T1D research and advocacy organization, Breakthrough T1D (formerly JDRF), is encouraging people, especially those with a family history, to "Detect so you can decide" and learn the potential risk for developing T1D. Early detection of T1D can help reduce the risk of life-threatening complications at diagnosis and allow people time to access care, participate in T1D clinical trials, and prepare for future medical needs.

What is T1D?

Nearly 1.45 million Americans live with T1D, which is an autoimmune disease that causes your pancreas to make very little insulin or none at all, and this number is increasing every year. Insulin is a hormone that everyone needs to get energy from the food they eat. People with T1D must take insulin by shots or an insulin pump to survive.

Who is at risk for T1D?

A family history of T1D increases your chance of a T1D diagnosis by 15 times. However, it's important to know that over 85% of people with T1D do not have any family history of the disease, which is why early detection through screening is so important.

"A type 1 diabetes diagnosis is life-changing and can be overwhelming, but early detection helps individuals and their families prepare and plan," said Anastasia Albanese-O'Neill, PhD, APRN, AVP of community screening and clinical trial education at Breakthrough T1D. "The benefits of early detection are significant and could lead to a delay in the onset of the disease through approved therapies or accelerate research through clinical trials."

How early detection works

A simple blood test can detect the presence of certain islet autoantibodies, as the earliest indication of T1D. Screening for T1D typically tests for four autoantibodies, and research shows that most people who test positive for two or more autoantibodies persistently will eventually develop T1D. This early awareness can help people monitor for disease progression and symptoms and help avoid potentially life-threatening complications at diagnosis.

"Screening and monitoring can help reduce the number of people with T1D who experience diabetic ketoacidosis at diagnosis from between 25-50% to 5%," added Albanese-O'Neill. "Because early detection is so important, we want people to know their options and the steps they can take to screen for T1D."

How you can take action for your health

In partnership with local clinics nationwide, Breakthrough T1D is expanding early detection opportunities, especially for family members of people who have been diagnosed with T1D. Online resources will help you talk to your doctor about the potential benefits of screening for your family.

In June 2024, new consensus guidance was developed under the leadership of Breakthrough T1D in partnership with over 60 global experts. This new guidance will help the healthcare team care for those who test positive for autoantibodies, monitor for disease progression and guide patients by providing support and information about appropriate therapies, clinical trials and other resources.

To learn more, talk to your health care provider and visit BreakthroughT1D.org/early-detection.