Using a new model for projecting the number of people with Type 1 diabetes worldwide, members of an international team of researchers estimate up to 17.4 million cases by 2040, double the number of people known to have the disease today.

A study published in the Lancet Diabetes & Endocrinology says 8.4 million people now live with Type 1 diabetes, which occurs when the pancreas produces little or no insulin, leading to a buildup in blood sugar that can be disabling or fatal. Symptoms include excessive thirst and urination, blurred vision, exhaustion, dry skin and unintended weight loss.

Tracking has improved in recent years, but Type 1 diabetes is underrepresented. In addition, because many countries don’t collect Type 1 diabetes data, the numbers have historically skewed toward North America and Europe.

To counter the spotty numbers, the researchers created a model that used the available data to predict Type 1 diabetes worldwide.

The estimates counter some myths about the disease, which was once called juvenile diabetes because its onset often occurs during childhood. Yet the majority of people diagnosed with the disease are between ages 20 and 59, and more adults than children are diagnosed each year.

Children, however, are more at risk for death from the disease, especially in low-income countries. A 10-year-old who develops Type 1 diabetes in a low-income country has an average remaining life expectancy of just 13 years vs. 61 years in high-income countries, the researchers write.

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About 175,000 people worldwide died because of Type 1 diabetes in 2021, they believe, and 63 to 70 percent of the deaths in those under age 25 occurred because the disease wasn’t diagnosed.

Better data could help that diagnosis rate rise, the researchers say.

“There is an opportunity to save millions of lives in the coming decades,” said Graham Ogle, a University of Sydney Medical School researcher and one of the study’s co-authors, in a news release. The numbers are a warning, he said, that without solutions – such as universal insulin access, a better standard of care and awareness of the symptoms of Type 1 diabetes – the team’s projection will become a reality.