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Lucia grew up with a story her grandmother rarely told without tears. Her grandmother lost her only son in his early twenties. The official cause was kidney failure. He had been young, strong, and seemingly healthy. At the time, the medical community considered type 1 diabetes as a condition that only affected children. No one imagined it could appear in a young adult, so he wasn’t tested for it. In fact, he had been living with undiagnosed type 1 diabetes. The condition progressed silently until fatal complications developed.
Mistaking type 1 diabetes for type 2 in adults is partially rooted in assumptions. Because type 2 is far more common later in life, elevated glucose levels are often attributed to insulin resistance rather than to the autoimmune destruction of insulin-producing beta cells. In fact, some adults diagnosed with type 2 diabetes may have an autoimmune form of the condition, including latent autoimmune diabetes in adults (LADA).
This can lead to serious consequences: delays in starting insulin therapy, an increased risk of diabetic ketoacidosis (DKA) and avoidable complications. Studies suggest the problem is far from rare. Even in high-income countries, many children and young people are diagnosed with type 1 diabetes only when they are already in DKA. In the United Kingdom, around 26% of children are diagnosed with DKA. This rises to 38–45% in children under five, according to the National Paediatric Diabetes Audit.
DKA is largely preventable with earlier recognition of symptoms and prompt blood glucose testing. Monitoring programmes for children identified as being at higher risk of type 1 diabetes have shown that DKA rates at diagnosis can be dramatically reduced when families are educated and supported.
Mistaking type 1 diabetes for type 2 in adults is partially rooted in assumptions. In fact, some adults diagnosed with type 2 diabetes may have an autoimmune form of the condition
Years later, when Lucia was just ten, she began drinking water constantly. She woke up at night, thirsty and needing to use the bathroom repeatedly. Her grandmother recognised the signs immediately -memories of her son’s undiagnosed diabetes were still vivid. Thanks to early screening Lucia was diagnosed and received timely treatment.
Type 1 diabetes is an autoimmune condition in which the immune system destroys insulin-producing cells, requiring lifelong insulin therapy. Although often seen as a childhood condition, more than half of new cases occur in adults. The condition develops in stages. Long before symptoms appear, the immune system begins producing islet autoantibodies, detectable months or even years before insulin is required. The risk of progression depends on the number of autoantibodies present, age at detection and genetic background.
The staging model of type 1 diabetes defines stage 1 as the presence of two or more islet autoantibodies with normal glucose levels, stage 2 as two or more autoantibodies plus abnormal glucose levels without symptoms, and stage 3 as symptomatic type 1 diabetes.
Screening for islet autoantibodies identifies people at risk before symptoms develop. This allows closer monitoring, earlier insulin initiation and, most importantly, prevention of DKA. However, universal population screening is costly and logistically challenging, particularly in low- and middle-income countries (LMICs).
Targeted screening of higher-risk groups, such as first-degree relatives, is more feasible. Yet around 90% of those diagnosed have no known family history. This situation underscores the importance of broader awareness and accessible testing. Pilot programmes are assessing cost-effectiveness, psychological well-being and long-term outcomes. Digital health systems are emerging as important tools.
At 13, Anita developed constant thirst, frequent urination, weight loss and fatigue. In 1997, she was diagnosed in an Indonesian hospital with “diabetes,” but no one clearly explained the type. Doctors recommended insulin, but her parents were hoping for traditional alternatives and initially declined the treatment.
Anita’s condition quickly worsened, and she was later hospitalised in critical condition before finally starting insulin. Even then, she lived for years without a clear diagnosis. It was only in college, after C-peptide testing confirmed her pancreas was not producing insulin, that she learned she was living with type 1 diabetes. She finally received long-overdue clarity about her condition.
Screening is not only clinical but also emotional. Learning that a child or adult has islet autoantibodies can bring anxiety and uncertainty. Psychosocial support and peer networks must be essential parts of screening programmes. Dating back to 2013, evidence from cohort studies suggests that when families are well educated and supported, the benefits of avoiding DKA and preparing for insulin therapy outweigh the stress associated with knowing one’s risk.
Although often seen as a childhood condition, more than half of new cases occur in adults
In 2022, US regulators approved teplizumab, marking a turning point in efforts to alter the course of type 1 diabetes. This immune-modulating therapy is designed to delay the progression from stage 2 to stage 3, the point at which symptoms become clinically apparent, while preserving the body’s remaining insulin production.
The following year, the European Commission authorised teplizumab for people with stage 2 type 1 diabetes. What’s more, clinical trials suggest that a single course of treatment may delay the onset by approximately 2 years. This delay can provide valuable time, reduce DKA risk at diagnosis and allow families to prepare. However, high cost and limited availability mean access remains restricted in many LMICs.
Behind every statistic is a person and a family. In Nkiruka’s family, type 1 diabetes has appeared in every generation on her mother’s side, reaching her as the fifth. Determined to act early, she had her two children tested for diabetes-related autoantibodies. When results showed they had a genetic predisposition, she began regularly monitoring their blood glucose, watching for symptoms like unusual thirst or unexplained weight loss.
Public awareness campaigns, school education and community partnerships can improve recognition of type 1 diabetes symptoms and reduce stigma. Some countries are embedding testing guidance into national health systems, though experts emphasise assessment based on symptom clusters and clinical judgement rather than rigid mandates. Ongoing training for healthcare professionals and stronger global collaboration between organisations such as the International Diabetes Federation (IDF), the International Society for Pediatric and Adolescent Diabetes (ISPAD), the World Health Organization (WHO) and UNICEF are also essential to ensure consistent, age-inclusive diagnosis and care.
Nkiruka discovered the ELSA (EarLy Surveillance for Autoimmune diabetes) study through Facebook. The process was simple: an online consent form, a finger-prick test sent by post, and results within weeks, followed by supportive check-ins. Yet screening like this remains limited to research studies in the UK. For Nkiruka, early detection is not optional – it prevents hospitalisation, reduces trauma and gives families something priceless: time and hope.
There is a growing global consensus on the way forward, but behind every policy recommendation is a person. Lucia’s early diagnosis was possible because her grandmother recognised the signs that had previously been missed. Anita navigated misdiagnosis and delayed insulin treatment. Nkiruka chose screening for her children to prevent late diagnosis. Their experiences reflect both the cost of delay and the power of early action.
Ensuring universal access to insulin and essential care must remain the priority. At the same time, improving timely and accurate diagnosis across all ages, expanding targeted screening and digital follow-up, investing in equitable research, and strengthening awareness are essential actions. Early detection and modifying therapies are important advances, but they must be grounded in strong, inclusive health systems that guarantee care for every person living with type 1 diabetes.
IDF and ISPAD have produced a policy brief – Detect Early, Act Early: Improving Diagnosis of Type 1 Diabetes – that urges stronger global action to improve early diagnosis of type 1 diabetes. With over 9 million people living with type 1 diabetes worldwide and the majority of new cases occurring in adults, better awareness and accurate diagnosis are critical. The policy brief demonstrates the role of islet autoantibody screening in identifying risk before symptoms appear and notes emerging therapies that may delay progression. It calls for expanded access to insulin, diagnostics, education, and universal health coverage to reduce preventable deaths and inequities. Learn more and download.
This online event hosted by the International Diabetes Federation (IDF) highlights the role of islet autoantibody screening to identify people at risk of type 1 diabetes years before symptoms appear. The expert panel outlines evidence-based strategies to improve early diagnosis, reduce diabetic ketoacidosis, and promote prevention-focused approaches globally.
