In a groundbreaking discovery, researchers have identified a previously unknown form of type 1 diabetes affecting children and young people across sub-Saharan Africa, challenging decades of conventional medical understanding and raising critical concerns over widespread misdiagnosis on the continent.

Published in The Lancet Diabetes & Endocrinology, the study—the largest of its kind in Africa—reveals that around 65pc of young diabetes patients in the region lack the typical autoimmune and genetic markers of type 1 diabetes. Instead, they appear to be living with a novel, non-autoimmune form of the disease—potentially milder, yet poorly understood and improperly treated under current global medical guidelines.

The findings stem from the Young-Onset Diabetes in Sub-Saharan Africa (YODA) study, which tracked nearly 900 patients under the age of 25 in Uganda, Cameroon, and South Africa. Led by a consortium of African and international institutions—including Uganda’s MRC/UVRI & LSHTM Uganda Research Unit and the University of Exeter—the study is being hailed as a paradigm shift in understanding diabetes in African contexts.

“These findings are a wake-up call,” said Professor Moffat Nyirenda, Co-Principal Investigator and Director of the MRC/UVRI & LSHTM Uganda Research Unit. “They challenge our assumptions about type 1 diabetes and show that the disease may present differently in African children and adolescents. We urgently need to ensure that our diagnostic and treatment approaches are fit for purpose in African settings.”

The study also drew personal accounts from youth affected by the disease. Edith Mukantwari, a Ugandan patient advocate and co-founder of the Africa Diabetes Alliance, shared how she was misdiagnosed and put on treatment for type 2 diabetes at 16, which worsened her condition until she was correctly diagnosed years later.

“Before I was diagnosed, nobody in my family or community had ever heard of type 1 diabetes, much less knew it could affect children,” Mukantwari said.

One of the major surprises of the study is that despite lacking insulin, many children were surviving—something unusual in typical type 1 diabetes cases.

“We have always wondered why many young people diagnosed with type 1 diabetes manage to survive without insulin, at least for some time,” said Dr Jean Claude Katte, Principal Investigator of the YODA study and Translational Fellow at the University of Exeter. “These new research findings confirm our long-standing suspicion.”

The clinical implications are already being felt. Dr Catherine Nyangabyaki Twesigye, a paediatrician at St. Francis Hospital Nsambya in Kampala, noted that children at her facility often do not present with the expected co-occurring autoimmune conditions like thyroid disease or complications such as Diabetic Ketoacidosis (DKA), even after missing insulin doses.

“This makes us think the type of diabetes they have might be milder or different from what’s seen in other parts of the world,” she said.

The YODA team also tested data from the U.S.-based SEARCH for Diabetes in Youth study to explore whether this subtype exists outside Africa. While a small number of Black American children showed similar traits, the subtype was absent in white participants, pointing to ancestral or environmental influences.

Looking ahead, researchers will investigate the underlying causes of this subtype—including environmental exposures, infections, and nutrition—as well as its overlap with atypical type 2 diabetes in slim African youth.

The findings underscore a longstanding gap in global diabetes research, which has historically focused on white, Western populations.

“We must invest in context-specific research,” said Professor Eugene Sobngwi, Director of Healthcare Organisation and Technology at Cameroon’s Ministry of Public Health. “If we don’t, we risk misdiagnosing and mistreating millions of people.”

With rates of diabetes climbing across Africa and limited diagnostic infrastructure in place, this new discovery is a crucial call for rethinking how diabetes is diagnosed and treated on the continent—and a reminder of the value of inclusive, African-led research in shaping global health knowledge.