Health
Study Reveals Epilepsy Prevalence & Treatment Barriers in Uganda, Urgent Need for Awareness & Resources
By Davidson Ndyabahika & Julius Mugaga Tukacungurwa
A new study conducted in Uganda has unveiled the prevalence of epilepsy and identified significant barriers to treatment. The study conducted by Makerere University School of Public Health in partnership with Ministry of Health and Duke Global Neurosurgery and neurology, utilized community-based screening methods, found that urgent action is needed to increase awareness and allocate more resources to address this pressing public health issue.
Nearly 80% of individuals with epilepsy reside in low- and middle-income countries (LMICs), and a staggering 75% of those with epilepsy in LMICs do not have access to treatment. This alarming trend is further exacerbated by the stigma surrounding epilepsy, which often leads people to avoid seeking medical care due to fear of discrimination or social ostracization. The study underscores the urgent need to address the barriers to treatment, including stigma, and allocate more resources to improve epilepsy care in LMICs.
By providing a community-based descriptive statement about epilepsy in Uganda, this study sought to contribute vital information for intervention planning, addressing the urgent need for increased awareness, support, and access to treatment for people living with epilepsy in Uganda.
At the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala, Professor Anthony Fuller, the USA & Duke Neurosurgery Principal Investigator, revealed concerning findings.
The study unveiled that the national prevalence rate of epilepsy in Uganda is alarmingly high at 1.69 per cent, indicating that over 770,000 Ugandans are living with the disease. Professor Fuller’s presentation shed light on the urgent need for increased awareness, support, and intervention for those affected by epilepsy in Uganda.
During the investigation, participants were asked about their experiences with epilepsy, including symptoms such as shaking, falling, loss of consciousness, bladder control, and abnormal sensations. These questions were part of the primary screen in Phase One of the study, aimed at gathering information on epilepsy-related experiences in the past year.
With a meticulous screening process, the study examined 35,056 individuals suspected to have epilepsy, of whom 2,284 were found positive for unadjusted epilepsy, translating to a prevalence rate of 6.52% in the primary phase.
In the secondary phase, 732 individuals were confirmed positive for unadjusted epilepsy, resulting in a prevalence rate of 2.09%. In this phase, participants were asked about the frequency of attacks, occurrence in children during fever, and association with malaria-related hospitalization. These questions sought to gather additional information to aid in assessing and analyzing the nature and context of participants’ experiences with epilepsy.
Through rigorous clinical validation, including Neuro validation and electroencephalogram (EEG) tests, 594 individuals were confirmed to have epilepsy, bringing the final prevalence rate to 1.69%.
In the Central region, out of 11,746 individuals screened, 198 were confirmed positive for epilepsy, while 11,548 were negative, resulting in a prevalence rate of 1.69%. In the Eastern region, 125 out of 5,776 screened were positive, with a prevalence rate of 2.16%. In the Northern region, 68 out of 5,037 screened were positive, resulting in a prevalence rate of 1.35%. Lastly, in the Western region, 203 out of 12,497 screened were positive, with a prevalence rate of 1.62%.
These regional findings shed light on the distribution of epilepsy cases in Uganda and highlight the need for tailored interventions and support at a local level. “The epilepsy prevalence is unevenly distributed, ranging from zero to over 5% in specific districts,” says study report.
Dr. Fredrick E Makumbi, an Associate Professor and a Ugandan Principal Investigator for the study from MakSPH, highlighted the gap in community awareness regarding epilepsy treatment, leading to an increased prevalence rate.
He pointed out that the youth, aged 18 to 35, had a prevalence rate of 2.37 percent, while those aged 36 to 60 had a prevalence rate of 2.33 percent. Along with other investigators and participants, Professor Makumbi emphasized the need for further studies to identify driving factors and take equitable action.
Dr. Angelina Kakooza Mwesige, a Co-Principal Investigator for Uganda who is also a Senior Lecturer and Paediatric Neurologist in the Department of Paediatrics and Child Health, Makerere University School of Medicine noted interesting gender regional variations of epilepsy with higher prevalence in women compared to men.
In the Eastern region, the prevalence rate was higher in females at 2.40% compared to males at 1.97%. Similarly, in the Central region, the prevalence rate was 1.81% in females and 1.53% in males. In the Northern region, the prevalence rate was 1.33% in females compared to 1.37% in males, while in the Western region, it was 1.54% in females and 1.72% in males.
This revelation according to Dr. Kakooza has prompted further consideration for conducting a specialized study to investigate the underlying factors contributing to this statistic.
“We found the overall prevalence rate is 1.73% in female compared to 1.63% in male. We do not know the reason yet but we are investigating this. Also, what we found out, the medicine that can help treat this disease and the trained specialists are not enough. We need to ensure equal and free access to medicine for all. I appeal to all Ugandans, a person with this disease, just like any other disease deserves our support and care,” said Dr. Kakooza.
Dr. Daniel Kyabayinze, the Director of Public Health at the Ministry of Health -Uganda, thanked the researchers for the great study and acknowledged that epilepsy requires lifelong treatment and highlighted the need to continuously provide treatment for all those affected.
According to Dr. Kyabayinze, the government plans to use the study’s findings to estimate the treatment needs, and Kyabayinze expressed confidence that further examination by Makerere University School of Public Health’s partners will help identify associated factors, such as potential agents or organisms, that can be modified to combat epilepsy. He also noted that while some individuals are already receiving treatment, many Ugandans face challenges in affording the necessary treatment for epilepsy.
Dr. Kyabayinze emphasized the importance of placing mental health specialists in various locations across the country to ensure access to services, stating, “There is also a need to intensify sensitization efforts to avoid stigmatizing people with epilepsy and ensure they receive the services they need.”
Ms. Nina Mago, Founder and Program Advisor of Purple Bench Initiative, underscores the need policy makers to prioritize healthcare needs of individuals with epilepsy to needs of people with epilepsy. She emphasizes affordable access to good quality medication.
“When you have medication, you have less seizures and you become more confident on being independent, to participate in activities which may include going to school, holding up a job, social interaction but all this is possible when there is also strong awareness,” says Nina.
Ms. Mago, says epilepsy is a life-threatening condition; “I came up with a connotation of a phone battery, as a notification of battery low shows up, equally relates to a life about to be lost.”
Dr. Olaro Charles, the Director Health services – Clinical in the Ministry of Health stated that epilepsy remains one of the common mental health conditions in Uganda. He said that they have just concluded a joint review mission and found out that from all their mental health facilities, epilepsy constitute to almost 55.4% of patients.
“If you look at 2019/2020 they were about 314,000 then came to about 340,000 and then last year it was 251,000. This mapping however is very important because it helps us to plan for care. If we do the same in those regions with high prevalence, we may be able to plan well”. Dr. Oralo.
Dr. Sarah Nekesa, Executive Director of Epilepsy Support Association Uganda, called on members of Parliament to increase the budget for mental health drugs, including epilepsy medication, and ensure their availability. She emphasized the need for integrating epilepsy services with other healthcare services to improve accessibility.
Additionally, Dr. Nekesa highlighted the importance of grassroots awareness to combat stigma, and urged the government to allocate adequate human resources and support from health workers to encourage peer talks and build confidence among people living with epilepsy.
“We should increase the drug availability in health facilities and make sure that a person with epilepsy is able to get medication whenever they need it. Epilepsy is not understood by everyone so if everybody understands epilepsy it would be easier for treatment and stigma to go down and integration of epilepsy in every service that is given to the community”. Said Dr. Nekesa.
Through a European Union (EU) funded initiative, Makerere University and Mulago Hospital are hosting a German oncology reconstruction specialist Professor Dr. Thiha AUNG. AUNG is a surgeon, trainer at the Deggendorf Institute of Technology (THD), and researcher on cancer from the Deggendorf Institute of Technology (DIT), Germany.
With his international expertise in oncology and medical management roles at his home institution, his visit is a valuable addition to Uganda’s capacity building efforts in medical advancement.
Prof. Aung who arrived in Uganda in late September 2026 and has since then conducted free identified patient specialised surgeries and training for locals. These are expected to span two weeks. For the period, his service intersects medical expertise and humanitarian efforts.
This is not Prof. Aung’s first time in the country; his first major visit was in 2023, when he performed life-changing free surgeries on early patients. He then made medical history in June 2024 when he arrived to perform Africa’s first-ever lymph node transplant at Mulago Hospital.
It was against this background that the Makerere Public Relations Office engaged him in an exclusive interview to share his philosophy on medical service, his experiences in oncology reconstruction, and his unwavering belief that passion and dedication rather than just resources are the true drivers of sustainable medical progress.
Transforming Lives Through Oncology Reconstruction
At the heart of his mission through the ERASMUS – Oncology/Lymphedema project, is the treatment of lymphedema, a condition often referred to as elephantiasis.
In Europe, such surgeries can cost between 80,000 and 100,000 euros, making them inaccessible to many.
Thankfully, Professor and his team, including some of his post graduate students like Anna Friedrich (B.Sc) and Sophia Waser (B.Sc., PA) from the Institute of Medical Science and Engineering, have once again brought this specialised care to Uganda pro bono.
He highlights the story of a teacher who, after receiving surgery, regained her quality of life and returned to the classroom. For him, the impact is exponential. “You change one life, but this person changes a lot in the community.”
This shift from individual surgery to the long-term wellbeing of the community, reinforces the local impact of these services.
Professor AUNG’s Personal Conviction
The professor confessed that inherently, he commands himself that beyond knowledge, true progress is driven by passion and will rather than resources.
He does not agree with those that think money and resources are the sole prerequisite for change in the medical world, stating, “you cannot change with money only.” Rather, he upholds the importance of personal decision and commitment.
When discussing the challenges of working in resource-limited settings, he maintains a simple, direct explanation “it’s always beyond the money.”
Ultimately, the Professor believes that if he can provide the spark, his students and patients can carry through with the same flame for significant change.
Motivation to Serve in Uganda
When asked about his inspiration for entering the field and now volunteering to work in Uganda, he explained that his primary goal was always to serve others. “That’s why I finished my medical school to help as many people as possible with my skills.”
He views his medical expertise not as a tool for the privileged, but as a universal resource., “People are all the same, their anatomy is the same. So, I can help all these people pretty well,” Prof AUNG remarked.
His approach is motivated by a pay it forward dogma where treating a single patient creates a broader societal benefit. He illustrates this through his work with patients who, after surgery, are able to return to their professions like the teacher earlier mentioned.
Tips for Medical Professionals working in Uganda
As a foundation for professional growth, the Professor advised medical professionals working in Uganda to prioritise genuine interest in their work because he believes it is “the most important…” for “if you are interested, you will go far in the profession.”
He further reinforced the human capacity point, noting, “no matter what kind of equipment you have… it all depends on the people operating them and the patient.”
Professor AUNG concluded by encouraging doctors to overcome resource fears through action, stating, “If you want to create impact or change, you do.”
Dr. AUNG is part of the Lymphoedema Warriors Association (LWAU) in Uganda. He describes it as a grassroots organisation and commends them for “leveling the grond”. He reiterated his commitment to work with the organisation in reviewing patient reports to determine the best course of treatment.
Makerere University’s School of Public Health (MakSPH) showcased research, training and international partnerships supported through European Union funding during the EU Uganda Research and Study Fair 2026 held at Makerere University.
The fair brought together students, researchers, academics, government representatives and development partners to explore opportunities in education, research, innovation and international collaboration, while celebrating 50 years of partnership between Uganda and the European Union.
Through its exhibition, MakSPH highlighted research and capacity building initiatives addressing public health challenges including infectious diseases, non communicable diseases, health systems, climate change and pandemic preparedness.
18 EU funded projects supported at MakSPH
Prof. Rhoda Wanyenze, Dean of Students, School of Public Health, said the School has benefited from 18 EU funded projects over the past five years, supporting research and training across several areas of public health.
She said the projects have contributed to the training of PhD researchers and the development of research addressing infectious diseases and prevention, non communicable diseases, health systems, climate change and health.
Prof. Wanyenze also highlighted a new five year programme which started in 2021 that is aiming at strengthening capacity for research on pandemic preparedness and response, including outbreaks such as Ebola.
Another programme being undertaken with the Ministry of Health and Karolinska Institute focuses on improving maternal health while also addressing adolescent pregnancy and the health of mothers and children.
She described partnerships as critical to advancing science and innovation, noting that collaboration allows researchers in Africa and Europe to share knowledge and strengthen the impact of research on communities.
Research partnerships strengthen innovation
Prof. Robert Wamala, Director of the Directorate of Research, Innovation and Partnerships at Makerere University, said the exhibition provided an opportunity to showcase EU funded projects across the University.
He noted that the School of Public Health alone has more than 18 such projects, while other colleges also have several EU supported initiatives.
One of the projects showcased was PREPARE TID, a partnership aimed at developing rapid diagnostic technologies for emerging and re emerging infectious diseases.
Prof. Julius Okuni, Associate Professor of Veterinary Pathobiology and Molecular Diagnostics at Makerere University, said the project brings together universities, industries and other organisations from Africa and Europe.
The project is working to develop technologies that can quickly identify pathogens responsible for outbreaks such as Ebola, Rift Valley fever and Crimean Congo haemorrhagic fever.
According to Prof. Okuni, Makerere is involved in field and laboratory work to test and refine the technologies before they can be delivered to end users.
Fair provides platform for research visibility
For researchers at MakSPH, the fair also provided an opportunity to increase the visibility of ongoing research and create new connections with researchers, policymakers and potential funders.
Dr. Raymond Tweheyo, Honorary Lecturer and Senior Research Fellow in the Department of Health Policy, Planning and Management, said such exhibitions allow researchers to share their work and identify others working on related challenges.
He cited the CONNECT for Health project, which focuses on transforming non-communicable disease care in Uganda through collaboration with partners across several countries.
Dr. Tweheyo said exhibitions can help researchers connect with policymakers, civil society organisations and other partners who can contribute to translating research into practical solutions.
Assoc. Prof. Angelina Kakooza Mwesigye, Associate Professor and Child Neurologist at Makerere University College of Health Sciences, also emphasised the importance of exposing young people to international research opportunities.
She said the long standing Uganda Europe partnership provides opportunities for the next generation of researchers to learn, build networks and prepare for future research collaborations.
The School of Public Health’s participation highlighted the role of international partnerships in strengthening research capacity, supporting innovation and developing evidence based responses to Uganda’s public health challenges.
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