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.
A Voice for Excellence, Equity and African Sovereignty
When Dr. Michael Makanga walked onto the stage at the 8th Galien Forum Africa in Dakar on 31 October 2025 to receive the Special Career Achievement Galien Prize, presented by President Bassirou Diomaye Faye under the theme Health sovereignty: an imperative for Africa, the moment carried weight beyond any medal or citation. “It is a celebration of a lifelong commitment,” he said, “but also a reminder of a responsibility I have never been willing to compromise: to inspire others to raise their voices for excellence, science, and equity.”
For more than two decades, Dr. Makanga has been a quiet architect of Africa’s health sovereignty. His work has unfolded far from cameras: in laboratories constrained by resources, in policy rooms where African priorities demanded a stronger voice, and in mentoring sessions with young scientists seeking reassurance that their ideas mattered.
Born and trained in Uganda, Dr. Makanga earned a Bachelor of Medicine and Surgery from Makerere University before pursuing a master’s degree and PhD at the Liverpool School of Tropical Medicine. His career spans nearly 30 years, encompassing tropical medicine, clinical trials in Africa and Europe, and senior international management roles. Since joining EDCTP in 2004, he has guided its growth as a unique Africa–Europe partnership, strengthening African capacity for high-quality, ethical clinical research while accelerating solutions for poverty-related diseases. Today, he leads the Global Health EDCTP3 Joint Undertaking under the EU’s Horizon Europe programme.
President Faye captured the essence of Dr. Makanga’s achievement: “Scientific excellence is not negotiable; it is earned. It underpins our credibility and our sovereignty.” For Dr. Makanga, the statement is a call to action. “I hope this recognition reminds us that Africa’s scientists and innovators can lead global health research with excellence and purpose. We owe it to the next generation to build the systems and confidence that make this possible,” he said.
Dr. Makanga’s peers describe him as a “builder”: someone who strengthens research systems, mentors emerging scientists, and fosters equitable partnerships long before “local ownership” became a policy buzzword. In his own words, the award honors his “career’s contribution to advancing Africa’s health sovereignty” while reinforcing his commitment to ensure younger scientists do not have to fight for legitimacy as previous generations did.
The 2025 Prix Galien Africa celebrated Dr. Makanga alongside innovators reshaping African science. La Ruche Health, a Côte d’Ivoire-based digital health platform, won for connecting users to certified providers through an AI-powered system. Senegalese computer scientist Adji Bousso Dieng received a special prize for applying artificial intelligence to the natural sciences, including spotting emerging viral variants using her “Vendi Score” tool. The awards were organised with the support of the Presidency of Senegal, the Gates Foundation, the West African Health Organization, and the Rockefeller Foundation, with a jury co-chaired by Dr. John Nkengasong and Professor Souleymane Mboup.
Yet the award’s true weight lies not in ceremony, but in its symbolism. Dr. Makanga’s career exemplifies how African scientists can lead, shape policy, and influence global health priorities when empowered and supported.
Makerere University colleagues attest to this impact. Dr. Victoria Nankabirwa, a clinical researcher and epidemiologist, reflects: “EDCTP support allowed me to build multidisciplinary teams, enhance laboratory and trial infrastructure, and generate evidence relevant for policy and practice. It strengthened my scientific independence and expanded the long-term sustainability of my research, particularly on childhood vaccines.”
She adds, “Dr. Makanga’s vision and commitment have strengthened institutions, built capacity, and fostered equitable partnerships, enabling African investigators to lead complex studies that address the continent’s priorities. His recognition shows what is possible when scientists are empowered, trusted, and supported.”
Dr. Alex Kayongo, an immunologist at Makerere University, describes EDCTP support as “catalytic,” enabling advanced training and a platform to study microbiome–immune interactions in HIV-associated COPD. His work is shaping mechanistic insights and strengthening Uganda’s capacity for complex respiratory immunology research. “Global health funding is increasingly competitive, making EDCTP’s role even more vital,” he says. “Africa needs sustainable support for complex, lab-intensive research. Continued investment in infrastructure, leadership, and fair partnerships is essential if African institutions are to drive innovation and secure true scientific sovereignty.”
Dr. David Musoke, an associate professor of disease control, credits his EDCTP fellowship with deepening his malaria research and advancing his career. His studies combined housing improvements, environmental management, and behavioural measures to complement traditional malaria prevention, shaping practical, community-informed interventions. “Dr. Makanga’s contribution to African science has been tremendous, and his continued stewardship gives us confidence that evidence generated on the continent will increasingly shape policy and practice,” he observes.
Dr. Makanga’s impact is visible not only in individual careers but across institutions and nations. Through EDCTP, he has championed African-led trials, strengthened laboratory capacity, and fostered cross-country collaboration. Colleagues emphasize that his leadership has created a generation of African scientists who are confident, collaborative, and globally competitive.
“My experience with EDCTP-funded programmes has shown the transformative impact of African-led research,” Dr. Nankabirwa reflects. “Dr. Makanga’s vision and commitment have strengthened institutions, built capacity, and fostered equitable partnerships, enabling African investigators to lead complex studies that address the continent’s priorities. His recognition shows what is possible when scientists are empowered, trusted, and supported, inspiring the next generation of research leaders.”
Dr. Makanga’s recognition is a tribute to perseverance, vision, and mentorship: a scientist who kept going when resources were scarce, a leader who refused partnerships that treated Africans as subjects, and a mentor who reminded young researchers that they belong at the centre of global science.
As he stood among Africa’s leading innovators in Dakar, the message was unmistakable: Africa can lead, Africa must lead, and it will lead, through science, excellence, and equity.
Makerere University is proud to celebrate Dr. Michael Makanga, one of its distinguished alumni, on receiving the Special Career Achievement Prize of the Prix Galien Africa 2025. This honor recognises his exceptional leadership in medical research and his role in advancing African-led science. Through his work, Dr. Makanga continues to strengthen institutions, mentor emerging researchers, and amplify Africa’s voice on the global health stage.
Kalangala, an idyllic archipelago often romanticised for its sunsets, today witnessed a historic leap in healthcare. Makerere University Vice Chancellor, Prof. Barnabas Nawangwe, launched the Infectious Diseases Institute (IDI) Kalangala Clinical Research Centre—the island’s first modern research facility.
“This is more than a building; it’s a lifeline,” said Prof. Nawangwe. “IDI is not only Uganda’s leading health partner, managing over 20% of HIV cases, but research is first on its agenda. If people are not healthy, they can’t work—it’s useless to invest in anything else.”
Kalangala ranks third in HIV prevalence nationwide at 13.1%, with fishing communities hardest hit. Until now, residents endured perilous boat rides to the mainland for advanced care. “Accessing healthcare has always meant a journey across waves—long, costly, and sometimes dangerous,” said District Chairperson Jajab Ssemakula. “You have not only invested in Kalangala; you have brought Makerere University to Kalangala.”
Supported by the Gates Foundation, the centre is part of a multinational HIV prevention study conducted across 31 sites in Kenya, South Africa, and Uganda. Its first mission: testing whether a monthly pill can protect adolescent girls and young women from HIV—a breakthrough that could transform vulnerable communities.
“This centre means access without barriers,” said Dr. Andrew Kambugu, IDI Executive Director. “Kalangala residents no longer need to travel long distances for clinical trials or advanced care.”
Prof. Samuel Luboga, IDI Board Chairperson, reassured residents of IDI’s long-term commitment:
“We are not a fleeting partner. This sentinel research centre aligns with our vision of freeing Africa from the burden of infectious diseases. The assurance I give Kalangala is—we are here to stay.”
Henry Ssebunya, Deputy Resident District Commissioner, praised IDI’s innovation and consistency:
“IDI has treated and cared for people living with HIV, deployed medical drones to deliver life-saving medicines, and now built a research centre. This is a new chapter for Kalangala.”
From a sleeping sickness camp in 1906 to a cutting-edge research hub in 2025, Kalangala’s story is one of resilience, innovation, and hope.
-
Research2 weeks agoMakerere University and Ministry of Public Service Study Reveals Impact of Salary Enhancement on Teacher Performance in Uganda
-
General1 week agoMakerere University officially commences implementation of its Mentorship Policy
-
Education2 weeks agoReal life project: Makerere University Vice Chancellor hands over constructed Wall Fence to Makerere College School
-
Agriculture & Environment2 weeks agoSFTNB-MIIC Partnership Nurtures Entrepreneurial Learners & Change Agents
-
Health2 weeks agoMakSPH, MOH and JMS Lead National Efforts to Build a Resilient Health Supply Chain