- Type 5 diabetes also known as Diabetes MODY
- Formal recognition comes after years of debate
- Thought to affect up to 25 million globally
A new type of diabetes that is linked not to obesity but to malnutrition has been officially recognised, decades after it was first identified in developing countries.
The International Diabetes Federation (IDF) has formally recognised the condition as type 5 diabetes or maturity onset diabetes of the young (MODY).
This rare form of diabetes is thought to affect around 25 million people globally. It is caused by malnutrition-related low insulin production, mostly among lean and undernourished teenagers and young adults in low and middle income households.
Type 5 diabetes is now officially recognised following a vote held on 8 April at the IDF’s World Diabetes Congress in Bangkok, Thailand. The move comes after years of ongoing debate about its classification.
Meredith Hawkins, professor of medicine at Albert Einstein College of Medicine, explained that malnutrition-related diabetes “has historically been vastly underdiagnosed and poorly understood”.
She added, “The IDF’s recognition of it as type 5 diabetes is an important step toward raising awareness of a health problem that is so devastating to so many people.”
Type 5 diabetes is an inherited form of the disease that typically develops in adolescence or early adulthood due to a genetic mutation passed from parent to child. If a parent carries the affected gene, their children have a 50 percent chance of inheriting it.
It is not linked to obesity or lifestyle. Experts estimate that Mody may affect up to 25 million people worldwide, particularly young men in Asia and Africa with a body mass index below 19 kg/m².
Nihal Thomas, professor of endocrinology at Christian Medical College in India and member of the Type 5 Diabetes Working Group, said the condition causes abnormal functioning of pancreatic beta cells, leading to insufficient insulin production. He said, “Due to the lack of formal recognition, this condition has been understudied and misdiagnosed.”
Mody was first documented in Jamaica in 1955. Three decades later, the World Health Organization classified it as malnutrition-related diabetes mellitus but removed the classification in 1999 due to insufficient evidence.
Many patients are misdiagnosed as having type 1 diabetes, which can lead to dangerous outcomes. Dr Hawkins told Medscape Medical News that administering too much insulin to these patients can be fatal.
She noted that malnutrition-related diabetes is more prevalent than tuberculosis and nearly as common as HIV or AIDS, but the absence of a formal name made diagnosis and treatment more difficult.
Dr Hawkins said she first encountered the condition in 2005 at a global health meeting, where doctors from several countries described patients with “an unusual form of diabetes”.
She explained, “The patients were young and thin, which suggested type 1 diabetes, usually treated with insulin. But insulin did not help and sometimes led to dangerously low blood sugar.”
These patients also did not show characteristics of type 2 diabetes, which is typically associated with obesity. “It was very confusing,” she added.
In 2010, Dr Hawkins founded the Global Diabetes Institute at Albert Einstein College of Medicine to study malnutrition-related diabetes. In 2022, researchers at the institute and the Christian Medical College demonstrated that this condition is metabolically different from type 1 and type 2 diabetes.
She said, “People with this form of diabetes have a profound defect in their ability to secrete insulin. This finding has changed the way we understand and treat the condition.”
Currently, there is no standard treatment for type 5 diabetes. Dr Hawkins said patients often do not survive more than a year after diagnosis. She recommends diets higher in protein and lower in carbohydrates, with close attention to correcting micronutrient deficiencies.
“But this now needs to be carefully studied with the global support and official mandate from the IDF,” she added.
