News and insights brought to you by the International Diabetes Federation

In a recent IDF D-Talk podcast, host Phylissa Deroze explained that she developed type 1 diabetes at 31. Phylissa had spent eight long years being misdiagnosed. She believes this partly because she was an adult, so she was not checked for type 1 diabetes. She had all the classic symptoms of the condition but only received a type 1 diagnosis in the emergency room when she went into diabetic ketoacidosis (DKA).

In fact, up to half of type 1 diabetes diagnoses occur in adulthood, with as many as half of adults initially misdiagnosed as having type 2 diabetes because type 1 diabetes symptoms differ from those in children.

Commonly thought only to affect children and young people, type 1 diabetes can occur at any age. The increase among people aged 20 and older has raised questions about the factors contributing to this trend. The exact reasons for this increase in children and adults remain unclear, with researchers continuing to study various aspects and possible explanations. Let’s explore the evolving landscape of type 1 diabetes and delve into its global prevalence and the potential influences of genetics, environment, early-life factors and viral infections.

Understanding the changing demographics

Close to 9 million people are estimated to be living with type 1 diabetes around the world. Recent figures included in the IDF Diabetes Atlas Report, “Type 1 diabetes estimates in children and adults”, show that three in five new cases globally in 2022 were in people aged 20 or older. The occurrence of type 1 diabetes in adults varies worldwide. Asian countries have the lowest rates, while Nordic countries have the highest. These results also align with type 1 diabetes diagnosis in children and teenagers.

The role of genetics

Genetics can affect whether a person develops type 1 diabetes or not. While a population’s overall genetic makeup remains stable, how genes are inherited can contribute to the condition. Fifty years ago, women with type 1 diabetes were advised not to have babies. However, as medication and care improved, this has changed. Today, women with type 1 diabetes can have a safe pregnancy and deliver healthy babies. However, there remains a possibility of having a child who develops type 1 diabetes.

There's been some interest in looking at early life factors as possible causes. The mode of baby's delivery being a caesarean section being more likely to arise in a baby with type 1, infant feeding, childhood diet and the use of antimicrobials in early childhood. These have all been implicated as perhaps driving the increase,” Professor Dianna Magliano, Co-Chair IDF Diabetes Atlas.

Exploring environmental factors

Research also suggests that environmental factors may play a role in the increase in the number of people with type 1 diabetes. Possible factors include infant feeding, childhood diet, and antibiotic use. Some studies found correlations between type 1 diabetes and birth order, maternal age at birth, and caesarean section. However, these associations are weak and cannot fully explain the increase in type 1 diabetes.

The “hygiene hypothesis” is a leading theory. It suggests that our clean lifestyles have deprived children of early exposure to pathogens, which may hinder the development of a balanced immune system. This could increase the risk of autoimmune conditions like type 1 diabetes.

Other possible causes include dietary factors such as gluten consumption and when certain foods are introduced to infant diets. Environmental toxins such as heavy metals and endocrine-disrupting chemicals may also contribute. However, evidence supporting these factors is limited and inconclusive. Another factor that has been considered is the distance a person lives from the sea, suggesting a complex relationship between the environment and the development of type 1 diabetes.

The overload hypothesis

The “accelerator” or “overload” hypothesis suggests that the global obesity pandemic may contribute to the rise in type 1 diabetes among children. While overweight is usually associated with the development of type 2 diabetes, the extra strain of producing excess insulin could cause the beta cells in the pancreas to deteriorate faster in children already experiencing an autoimmune attack. This theory gains support from the high obesity rates in low-, middle- and high-income countries.

The virus hypothesis

Viruses may play a role in type 1 diabetes, but no clear link has been found yet. Researchers are studying changes in viral infections among young people to understand if they can cause immune system changes leading to diabetes. While no definitive proof exists, ongoing research offers hope in finding modifiable risk factors.

The impact of COVID-19

The COVID-19 pandemic has brought new perspectives to the study of type 1 diabetes. With children staying indoors and reduced viral circulation, one might expect a decrease in diagnoses. However, reports from countries like Finland suggest that the number of new cases of type 1 diabetes has not been significantly affected by the pandemic. This observation underscores the complex nature of the condition and the need for further research.

One of the great issues in high-income countries is delays in diagnosis in children and adolescents with type 1 until they develop DKA. Sometimes they can be very sick, and it can cause consequences or even death if the diagnosis is delayed too long,” Professor Graham Ogle, General Manager Life for a Child.

The case of misdiagnosis

Misdiagnosis of type 1 diabetes is common in adults and children, leading to delayed diagnosis and serious health outcomes such as DKA and early death. Adults often experience a slower progression of the condition and present different symptoms than children. In high-income countries, type 1 diabetes is often diagnosed late, while in low-income countries, individuals with classic symptoms are misdiagnosed with other illnesses. The T1D Index estimates that in 2021, 35,000 people with undiagnosed type 1 diabetes died within 12 months of developing symptoms. Therefore, educating doctors, other healthcare professionals and the community is crucial for rapid, accurate diagnosis and better health outcomes.

Shaping the future: research and awareness

Unravelling the complex interplay of genetic and environmental factors contributing to the increase of type 1 diabetes is daunting. Ultimately, the goal is not only to explain the rising prevalence of type 1 diabetes but also to find ways to reverse this trend and improve the lives of those affected. By fostering a collaborative approach between researchers, healthcare professionals, and policymakers, we can progress towards understanding and tackling this growing global health issue.

For more insights on the rise of type 1 diabetes in children, adolescents and adults, tune into D-Talk, where Professors Dianna Magliano and Graham Ogle join host Phyllisa Deroze to examine the reasons behind the phenomenon and share viewpoints on understanding and managing the condition for better outcomes. You’ll also hear a success story that boosted early diagnosis of type 1 diabetes in Mali.

Learn more about type 1 diabetes, treatments and targets

The IDF School of Diabetes course on Type 1 diabetes, treatments and targets offers an overview of the condition. This 30-minute course — designed for people with diabetes and their carers — covers insulin use, glucose management, and diabetes-related complications. Learning points also address lifestyle factors that affect glucose levels, such as diet and exercise. Upon completing five interactive modules, learners will better understand type 1 diabetes and support options.

Go to the course at IDF School of Diabetes and start learning now!


Justine Evans is Content Editor at the International Diabetes Federation

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