As global malnutrition crises persist and worsen in numerous nations, experts anticipate a surge in cases of a newly recognized condition: Type 5 diabetes. This distinct form of diabetes, intrinsically linked to nutritional deficiencies, is now garnering official attention after decades of being overlooked.
The journey to understanding Type 5 diabetes began in the early 1950s, when Dr. Philip Hugh-Jones, a British physician based in Kingston, Jamaica, encountered a perplexing group of patients at his diabetes clinic. During that era, the medical community primarily acknowledged two forms of diabetes, which Dr. Hugh-Jones himself would later categorize as Type 1 and Type 2 in his seminal 1955 study of hundreds of individuals. While the majority of his patients aligned with these established classifications, a specific cohort of 13 individuals presented symptoms that defied easy categorization, explains Michael Boyne, an endocrinologist at the University of the West Indies, where Hugh-Jones conducted his pioneering work.
These patients were notably young, slender, and appeared to be undernourished, according to Boyne. Typically, such characteristics would suggest Type 1 diabetes, a condition where the body ceases insulin production, often leading to weight loss. However, a critical distinction emerged: these 13 patients never developed ketoacidosis, a life-threatening complication of Type 1 diabetes that arises when the body, lacking insulin, begins to burn fat, causing blood to become dangerously acidic. This absence of ketoacidosis, despite their thinness, effectively eliminated Type 1 as a diagnosis, Boyne notes. Furthermore, they didn't resemble Type 2 diabetics, who are typically overweight.
Recognizing their unique presentation, Hugh-Jones labeled them 'Type J,' a moniker derived from Jamaica, where he made his observations. This initial naming, along with others that followed, failed to gain widespread acceptance, even as similar cases continued to appear, particularly in regions grappling with severe malnutrition. Seven decades on, a global consortium of researchers is now advocating for a formal designation: Type 5 diabetes.
Dr. Meredith Hawkins, a prominent diabetes researcher at Albert Einstein College of Medicine, asserts that 'the time is ripe' for the official recognition of this disease, which could affect up to 25 million individuals worldwide. Following its adoption by the International Diabetes Federation in April, Hawkins and her international colleagues have published a perspective in The Lancet Global Health, urging other major health organizations, including the World Health Organization (WHO), to also embrace this new classification. Nihal Thomas, an endocrinologist involved in the initiative at Christian Medical College in Vellore, India, emphasizes the scientific necessity of naming this condition. He adds that patients stand to 'benefit a lot,' as current misdiagnoses can lead to life-threatening treatments.
Hugh-Jones's 1955 publication spurred researchers globally to identify similar, atypical diabetes cases that defied the Type 1 or Type 2 classifications. Boyne recounts that the condition was known by various names across different regions, yet all described the same phenomenon, with a particularly strong association observed between early-life malnutrition and the disease's prevalence in Southeast Asia, India, and Africa. Hawkins's own encounter with this distinctive diabetes variant occurred in Uganda during the early 2000s. She recalls treating numerous impoverished patients from rural areas who presented as exceptionally thin, malnourished, and with alarmingly high blood sugar levels. They displayed classic diabetic symptoms such as frequent urination, intense thirst or hunger, and in some instances, nerve damage.
Initially, these patients resembled typical Type 1 cases to most clinicians, including Hawkins. The conventional treatment involved prescribing substantial insulin doses for home use. However, she and her team soon discovered this approach could be fatal. Hawkins explains that without adequate food intake at home, this treatment often amounted to 'a death sentence from low blood sugar.' Insulin facilitates glucose transport from the bloodstream into cells for energy. An excess of insulin combined with insufficient caloric intake can dangerously deplete blood sugar levels. These tragic outcomes, particularly the deaths of young individuals from hypoglycemia due to inappropriate treatment, became a powerful impetus for their research, Hawkins emphasizes.
Subsequent research by Hawkins and her peers revealed distinct physiological differences in Type 5 diabetes patients compared to those with Type 1 or Type 2, with these divergences strongly linked to malnutrition. Hawkins explains that affected individuals typically experience malnutrition from fetal development through adulthood. They remain persistently thin, never fully recovering, which sets them apart from other diabetic classifications. A crucial physiological distinction lies in the pancreas, the organ responsible for insulin production. Research indicates that early developmental malnutrition severely impairs the pancreas's capacity to secrete adequate insulin. Boyne starkly describes their pancreatic function as 'crappy,' noting it's compromised but not to the same extent as in Type 1 diabetes. This renders Type 5 diabetes patients unique: their cells respond to insulin (unlike Type 2 patients who often exhibit insulin resistance), and they produce some insulin, but not enough to effectively regulate blood glucose levels.
Hawkins asserts that if Type 5 diabetes is indeed a distinct condition, it necessitates a unique treatment protocol. She hopes the new classification will stimulate further research to identify the most effective therapeutic approaches. However, the concept of Type 5 diabetes as a wholly distinct entity, warranting a new name, is not universally accepted within the broader diabetes research community. Dr. Anoop Misra, an endocrinologist at the Centre of Nutrition & Metabolic Research in New Delhi, voices skepticism, suggesting that formal classification might prematurely solidify what could be a poorly understood facet of Type 2 diabetes, rather than a truly separate condition. He argues that current data remains insufficient to unequivocally establish a distinct form of the disease.
Despite this dissent, the International Diabetes Federation (IDF) has moved forward, establishing a working group dedicated to developing improved diagnostic criteria and treatment guidelines for Type 5 diabetes. (The 'Type 5' designation was chosen due to ongoing efforts to label other forms of diabetes as Types 3 and 4, making it an open slot). Proponents are optimistic that recognition from other health bodies, like the WHO, will bolster these efforts, particularly as the global incidence of this condition is projected to increase. Boyne warns that ongoing food crises in regions such as Gaza, Sudan, the Democratic Republic of Congo, Nigeria, and Yemen are likely predisposing an entire generation to a heightened risk of developing Type 5 diabetes. He laments the situation, stating, 'It's really heart-rending,' and tragically emphasizes that this condition is fundamentally 'preventable — it's preventable by food.'
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Originally published at: https://www.npr.org/sections/goats-and-soda/2025/09/29/g-s1-90669/neglected-form-of-diabetes-with-unusual-symptoms-finally-gets-its-own-name
