“Many families still see type 1 diabetes as a curse”

In Uganda, the challenges surrounding type 1 diabetes extend far beyond access to insulin. According to Ugandan researcher Wenceslaus Sseguya, PhD, MSc, families, healthcare workers and health systems all face major structural and social barriers such as stigma, fragmented data systems and limited healthcare capacity that continue to affect care for children and young people living with diabetes.

Wenceslaus Sseguya, PhD, Msc, is part of the Early-Career Researcher Network on Type 1 Diabetes, an international initiative that brings together early-career researchers from low- and middle-income countries to strengthen collaboration, build research capacity, and improve the use of data for better diabetes care.

“Many families still see type 1 diabetes as a curse or evil doing,” he explains. “Some believe it can be cured through spiritual or traditional means. For others, the fear that the child may suddenly die overnight makes them view the child as a liability. This creates stigma and isolation.”

Wenceslaus is attached to St Francis Hospital Nsambya in Uganda, where he works in diabetes care research and has participated in guideline development across East Africa. His own journey into diabetes care began through his work on contextualised diabetes nutrition education and information after his undergraduate training in nutrition and dietetics. Since then, he has remained engaged in improving diabetes care capacity in Uganda.

Fragmented Data Systems Create Additional Burdens

One of the major themes highlighted in both the interview and the accompanying video is the challenge of fragmented healthcare data systems.

Healthcare workers are often required to enter the same patient information multiple times into parallel systems, creating both workload and data quality challenges.

“We have multiple data systems that a health worker has to work with,” Wenceslaus says. “They end up entering data most likely three times. That affects data adequacy and accuracy.”

According to him, stronger and more integrated diabetes registries are urgently needed:

“We need one single data registry that is rich, adequate and accurate.”

Significant Rural-urban Disparities Remain

The interview also highlights large differences between urban and rural diabetes care.

In rural areas, access to emergency care, diabetes education and trained healthcare workers remains limited. Wenceslaus explains that mortality is often higher in rural settings because families may not recognise symptoms early, know how to respond to emergencies, or have access to equipped emergency centres.

At the same time, many diabetes programmes remain heavily donor-supported, raising concerns about long-term sustainability.

“The government’s capacity is not yet fully ready to take over those services,” he says. “Health financing is still limited.”

Building Local Research Capacity

Despite growing international attention to diabetes in Africa, Wenceslaus believes that type 1 diabetes research still receives relatively limited attention compared with type 2 diabetes and obesity.

Much of the existing research funding comes through international collaborations rather than national funding mechanisms.

Still, he sees positive developments emerging through regional collaborations and growing engagement among young researchers.

“We need research that informs implementation and management within our own context,” he explains.

This perspective is one of the reasons why the LMIC T1D Early Career Researcher Network has been established to strengthen local research capacity, foster collaboration across countries and support early-career researchers working in the field of type 1 diabetes in low- and middle-income settings.

Looking Ahead

When asked what he hopes for the future, Wenceslaus does not point first to technology, but to dignity and inclusion.

“I want to see an environment where type 1 diabetes is acknowledged like any other condition,” he says. “Where there is no stigma, where children are supported, and where they are seen as having the potential to thrive like anyone else.”

The interview forms part of the upcoming LMIC T1D webinar and assignment programme focusing on WHO PEN implementation, clinical audit and diabetes data systems across low- and middle-income countries.