Moses Egesa was a teenager when he got diagnosed with Type 1 diabetes, a condition which has altered his dream.
“I’ve lived with Type 1 Diabetes (T1D) for 11 years now. I was diagnosed in 2013 when I was 15 years old. The journey was challenging,” narrates Egesa, a youth beaming with optimism.
“At that age, access to insulin (diabetes treatment) was very challenging and I didn’t know anything about diabetes.”
Hailing from a humble background in Bujagali Village, Jinja City, Egesa says his condition brought a lot of confusion to the family and community, with some linking it to witchcraft.
“Doctors explained to me that any person can get Type 1 diabetes. It’s not witchcraft, though the community thought it was witchcraft,” he recalls. “I tried every kind of herbal [concoction] in Uganda to look for a cure... My parents used to bring anything. I also went to those pastors to pray for me so that I get cured of Type 1 diabetes.”
Even health facilities did not help much.
“And many people even thought that it was malaria. So I used to go every time to the hospital to get malaria treatment,” Egesa shares.
He says besides the sickness, the frequent hospitalisation came with heavy financial costs and an emotional impact on him and the family.
Dr Thereza Piloya, a senior lecturer and a specialist in childhood diabetes at Makerere University Medical School, observes that many children struggle to get prompt and correct diagnosis across the country.
“I think the misdiagnosis comes from the fact that our community thinks a child cannot have diabetes. They know it’s for our old parents, our grandparents, and it’s not for children,” she notes.
“But I want to tell everyone, for as long as you have breath, you are a candidate for diabetes, either Type 1 or Type 2. Diabetes means high blood sugar in the blood for all types.”
This, according to the specialist, means that whether Type 1 or Type 2, one has a high blood sugar level above the ranges that are considered normal.
“The difference between the one for adults, which we call Type 2, and childhood, the one for childhood and young adults, which is called Type 1, is that it starts early,” Dr Piloya explains.
She adds: “In Type 1 diabetes, the children do not produce a hormone called insulin. If they produce it, it’s very little. So their pancreas does not produce that hormone.”
The expert, however, explains that this doesn’t mean the children are born without the insulin hormone or the ability to produce it.
“But many of them, there’s some destruction that is ongoing that no one is seeing. It doesn’t cause pain, it doesn’t cause anything, but their body fights the pancreas,” she highlights.
“Some cells in the pancreas that produce that hormone, insulin, and slowly the insulin-producing cells in the pancreas scar and they stop producing that hormone. So we call it T1D or childhood diabetes.”
Dr Jean Claude Katte, an African scientist who has researched T1D in Uganda and other African countries, explains that insulin is the hormone responsible for bringing down blood sugar levels.
“The blood sugar is high because there is nothing to regulate it. T1D is common in young people, although some old people can also have it,” he notes.
Egesa says at first, people were telling him “Diabetes is a condition for old people, for people who are rich, so it was challenging on my side.
“I didn’t know how to inject, so I was fearing, and I didn’t know the foods I was supposed to eat. Also, the information that I got from the clinic that I was diagnosed from was different from the information that I have now,” he reveals.
“They were limiting me from eating any kind of food at my diagnosis. I used to eat only two types of food, which was challenging at school.”
Egesa says the challenging journey of T1D also impacted his family.
“Being the firstborn in the family, it was expensive to the family, because buying insulin, I used to rationalise my insulin so that one vial can take the whole month other than injecting all the doses so that they go and buy another one,” he narrates.
Dr Piloya says it takes a lot of endurance to live a full life for a child with T1D.
“As you hear the word warriors, they are warriors, because they need to prick three to six times a day to check whether the sugar is in range before they give the injection,” she says.
“So you prick for the blood sugar, then you prick your injection. So the suffering was much.”
Altered Dreams
Egesa, a warrior, says: “I wanted to be a doctor. That was my dream... But I was always admitted to the hospital. So this affected me because I was diagnosed at 15 years of age when I was a semi-candidate (in Senior Three) going to a candidate class.
“I remember it was the third time now going to a candidate class. So it affected my performance in the exams,” he narrates.
Egesa adds: “I used to miss school, so it affected my education. So really, whatever I wanted to get to be a doctor, I didn’t achieve it, though I went into another profession that I’m in now.”
Another young person with T1D, Ivan Okoth
Ivan Okoth was diagnosed while he was in secondary school. He says he has not achieved his dream of becoming an engineer because his condition couldn’t allow him to spend long hours in class as was required of science students.
“I am now a lawyer. I managed to go through my academic life –A-Level, university, Law Development Centre as a diabetic and I have only been able to do that because of the help that I have got from the diabetes clinic at [St Francis Hospital] Nsambya as well as Sonia Nabeta Foundation (SNF) that has helped me get moral support from my fellow diabetics,” he notes.
SNF is an NGO that supports children by providing or increasing access to medicine [insulin] and supporting the education of the children.
Egesa advises young people with T1D to always have hope. “Because this is a long journey. As long as you accept the condition that you have, you can achieve anything. Type 1 diabetes can never limit you to achieve your dreams.”
“It's when I accepted that, yes, I can do this, I can also graduate, become an accountant, reach where I am, 11 years now. So as long as you accept, type 1 diabetes can never challenge you,” he adds.
The International Diabetes Federation says about 25,000 children and adolescents under 20 years have diabetes in Africa. It ranks Uganda among the top 48 countries with a growing diabetes-related health issue. PHOTO/FILE
Burden
According to researchers, more than 3,000 children and young people in Uganda have T1D. Many in communities also fail to get a correct diagnosis and or die due to failure to get proper care.
Dr Piloya says Mulago hospital’s diabetes clinic has 300 young people with diabetes getting care, and the clinics in Arua, Lira, and Soroti regional referral hospitals each have between 100 to 300 young persons with T1D that they provide care for.
Others also get care from other government and private facilities. Dr Katte, who has been doing studies in Uganda, also notes in a 2023 research report that the actual burden of T1D in the continent is not known.
The International Diabetes Federation (IDF) estimates that about 25,000 children and adolescents aged less than 20 years have diabetes in Africa.
“There are suggestions that this number is an underestimation of the true burden of type 1 diabetes in sub-Saharan Africa, given the lack of data from many countries and high disease mortality,” Dr Katte reasons in the report published in Frontiers in Public Health.
“It is thought likely that many people with type 1 diabetes may die before a diagnosis is made ... Therefore, the true economic burden of the condition in Africa is largely unknown.”
The World Health Organisation (WHO), on the other hand, says: “In 2017 there were nine million people with type 1 diabetes; the majority of them live in high-income countries. Neither its cause nor the means to prevent it are known.”
Researchers Alexia G. Abela and Stephen Fava of the University of Malta and Boshen Gong of China Medical University note that there is a general rise in the incidence of T1D globally.
Boshen and colleagues, in their 2024 report published in Nature, a scientific journal, indicated there has been an eight percent increase in T1D incidence in the last two decades.
“T1D incidence among adolescents and young adults increased from 7.78 per 100,000 population in 1990 to 11.07 per 100,000 population in 2019. T1D mortality increased from 5,701.19 in 1990 to 6,123.04 in 2019, representing a 7.40 percent increase in mortality,” the report reads.
“The European region had the highest T1D incidence in 2019. Middle-SDI (socio-demographic index) countries exhibited the largest increase in T1D incidence between 1990 and 2019,” the report reads further.
Scientists are investigating whether infectious diseases, certain genes inherited from parents, some foods, air pollution, vaccines, and psychological stress could be driving the increase in cases in Uganda and globally.
Perceptions in society
Ramathan Masette, another young person with T1D in Mbale, who was diagnosed in Primary Six, says his relatives linked his condition to a curse.
“My father didn’t believe it because it reached the extent of saying that ‘in our family, we don’t have anyone with diabetes. I think it is just a curse’,” he recalls.
Ms Hamidah Nabakka, a 22-year-old lady from Wakiso District, is an aspiring seamstress and fashion designer. She has lived with T1D for about 17 years.
“Before the diagnosis, my condition was mistaken for other chronic illnesses like sickle cell and malaria. This condition was a big mystery to everyone. I used to miss school so it affected my education. So really, whatever I wanted to get to be a doctor, I didn’t achieve it because when I was diagnosed with type 1 diabetes, no one believed that a child could be diagnosed with it,” she says.
Ms Nabakka adds: “Everyone was well-intentioned but still, I was administered different herbal medicines all in search of a cure. It took time for my family to understand that it was only insulin that could save me. My family pulled together resources to help."
Nabakka, Okoth, Masette, and Egesa are some of the warrior coordinators who are now advocating for better access to comprehensive, accessible, and affordable care for T1D.
Ms Vivian Nabeta, the executive director of SNF, which has been bridging the gaps in care and social support by giving the warriors insulin, says more needs to be done. The Foundation works through the warrior coordinators to support young persons with T1D.
“The sole goal is to empower our warrior coordinators at the clinics to work with their nurses and the village health teams to raise awareness for T1D. What are the signs and symptoms?” she says.
Dr Charles Oyoo Akiya, the commissioner for non-communicable diseases (NCDs) at the Ministry of Health, says they are engaging the government to increase funding for prevention and care for diabetes and other NCDs.
“Diabetes is a big problem in this country just like other NCDs. And the burden of NCDs has ever risen. In terms of mortality, NCDs contribute 33 percent of all the deaths recorded in this country annually,” he says.
Dr Akiya adds: “We have a lot of resource constraints, but I think it is a matter of putting our priorities right. We can do something about these challenges. We can mobilize resources to address the problems. There are issues around medicine, diagnostic equipment, human resources, and many others. As a ministry, we are aware of those constraints, but we are also doing our best to address them.”
Dr William Lumu, the president of the Uganda Diabetes Association (UDA), says in addition to improving access to diagnosis and care, the government should step up efforts to control the proliferation of herbalists who, without any scientific evidence, are claiming that their medicines cure diabetes.
He reveals that about 80 percent of patients have been lured by herbalists to use concoctions as treatment at some point.
“I have seen many people coming to the hospital, after taking their herbal medicine, they want us to troubleshoot. But how do you expect us to troubleshoot things we are not sure about?” he asks.
Dr Lumu notes that effective diabetes treatment, which improves a patient’s quality of life, goes beyond only controlling blood sugar.
“Diabetes is multi-systemic. We have issues with the eyes, teeth, the gum, the heart, liver, and kidneys that can be affected by the condition,” he says.
Dr Lumu adds: “If you summarize all those issues into only blood glucose, then that is very unfortunate. Are you saying the medicine that reduces blood glucose will solve all those issues? We need to be ethical.”
Dr Piloya says care for T1D has been improving. She says there are better technologies such as continuous glucose monitors that should be adopted to improve care and quality of life.
“There have been big strides in diabetes care, and I keep telling the warriors, the future is bright. Because as a medical student, I saw people use injections as big as those that are used for artificial insemination, to inject themselves... now, they just place the pump, just like a cannula, which you use in hospitals. You put in a small vial of insulin, which you just keep refilling,” she says.
Additional reporting by Betty Mudondo
