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.
On August 20, 2025, Makerere University School of Public Health (MakSPH) convened a timely workshop on Strengthening Equitable Partnerships in International Research Collaboration in Uganda. Held at the MakSPH Auditorium, the event brought together researchers, policymakers, and institutional leaders to reflect on how Uganda, and indeed the wider region, can engage more effectively and derive greater benefit from global research collaborations.
Delivering the keynote address, Prof. David Musoke Serwadda, a Professor Emeritus at Makerere University and a globally recognised HIV researcher and epidemiologist, urged a rethinking of how international research partnerships are structured. A former head of the Institute of Public Health (IPH) and later Dean of the School, serving between 2003 and 2009, Serwadda is also the founding director of the Rakai Health Sciences Programme (RHSP), which is one of Uganda’s most influential research initiatives on HIV. While acknowledging the many benefits Uganda has gained from global research collaborations, he cautioned that too many times, these partnerships remain transactional, shaped by donor priorities, bound to project cycles, and offering limited long-term value to local institutions once projects close.
Prof. Serwadda, himself a globally recognised and well-accomplished researcher, with over four decades of experience and numerous awards for his contributions to science and global health, observed that Ugandan partners are many times included in research projects for visibility rather than substance, often excluded from core roles such as Principal Investigators or from influencing agenda-setting, budget control, and authorship. “Partnerships are not an end in themselves; they exist to help us achieve mutually agreed objectives built on shared responsibility and reciprocal obligations. Too often, Southern institutions are brought into projects late, simply for optics. That is not equitable collaboration,” he insisted.
During his talk, he stressed that this imbalance undermines both research quality and sustainability, noting that normally, when local researchers are sidelined, studies often fail to align with national priorities or build capacity that endures. By contrast, partnerships that are grounded in mutual respect, fair resource sharing, co-design, and shared decision-making have the impact of producing knowledge that is globally relevant and locally impactful.
“Equity in partnerships is about fairness, ensuring that all partners, regardless of context, can contribute meaningfully. This also requires responsibility on our part in the Global South. We must insist on involvement from project conception, negotiate fair terms, and strengthen our own systems to manage collaborations effectively,” Prof. Serwadda advised, emphasising that strong institutions, clear strategy, agenda and objectives are key for local institutions to engage in mutually fair and beneficial research collaborations at the global and continental stage.
As Director and later Dean of MakSPH, Prof. David Serwadda spearheaded numerous research collaborations and attracted substantial grants that elevated the School and the University’s global standing. Today, MakSPH is recognised as Makerere University’s flagship unit for its wide-ranging partnerships and robust research management systems. Since its beginnings as a small Department of Preventive Medicine in 1954, through its transformation into the first Institute of Public Health in sub-Saharan Africa in 1975, its elevation to School status in 2007, and most recently its reinstatement as a standalone School with college status within Makerere University in January 2025, a status first granted in 2001, MakSPH has built a 70-year legacy of advancing public health through research, training, and policy engagement.
The School’s evolution, as often couched by its leadership, has been anchored on strategic and strong partnerships. These collaborations, be they local, regional or global, have driven health systems innovation, strengthened capacity, and informed policy, making partnerships the cornerstone of the School’s past achievements and future ambitions. At the celebration of the School’s 70th Anniversary, marked in December 2024, Makerere University Vice Chancellor Prof. Barnabas Nawangwe hailed MakSPH’s research output, community impact, and strong partnerships cultivated throughout the years. The Mak VC cited the School’s pioneering role in the HIV response led by Prof. Serwadda in the 1980s, the establishment of nutrition centres such as the Mwana Mugimu Unit at Mulago Hospital and across Uganda by the late Prof. John Kakitahi in the 1990s with support from Rotary International, and community projects like Kasangati Health Centre along Gayaza Road with support from the Rockefeller Foundation in the late 1950s, which advanced public education on healthy environments and wellness.
“The School of Public Health brings in almost half of all research grants at Makerere University, both in number and value, and these partnerships have been central to tackling Uganda’s public health challenges. From pioneering HIV/AIDS work that shaped global prevention strategies to interventions in maternal health, malaria, and infectious diseases, MakSPH has consistently combined academic excellence with community service. Its leadership during the COVID-19 pandemic further showed its ability to respond to national health emergencies with evidence-based solutions that directly benefit the people,” Prof. Nawangwe said with gratitude for the work done by the School through collaboration.
In 2024, the School had over 350 peer-reviewed publications in high-impact international journals as a result of this wide network and partnerships. MakSPH currently maintains a strong mix of North–South and South–South collaborations. Within the continent, the School is actively working in more than 25 countries, often partnering with multiple institutions within individual countries to advance research, capacity building, and policy influence. One such recent collaboration is the Partnership to Enhance Technical Support for Analytical Capacity and Data Use in Eastern & Southern Africa (PERSuADE) Project, funded by the Global Fund. Under PERSuADE, MakSPH, the prime grant recipient, hosted the secretariat led by Dean Prof. Rhoda Wanyenze as Principal Investigator, tasked with overall coordination across 12 countries, while a Steering Committee chaired by Prof. David Serwadda provided oversight.
PERSuADE was implemented in two phases between 2018 and 2023. The project brought together 12 universities and 12 Ministries of Health in East and Southern Africa to strengthen analytical capacity and promote data use in national health programmes, cascading skills to districts and lower facilities. In its second phase, the project trained over 1,500 health staff, including 934 at the sub-national level, in data analysis and use, and generated more than 80 analytical outputs on HIV, TB, and malaria. These informed National Strategic Plans in seven countries and improved programme strategies in all 12. Sixteen in-service staff from seven countries received specialised training in HIV key population surveillance, health information systems, and data use. The project also piloted the Maturity Index Model in five countries, helping ministries track progress in institutionalising data-driven decision-making.
In Uganda, the PERSuADE project was implemented in Kiboga, Buikwe, Kasanda, Mukono, and Mityana districts, selected by the Ministry of Health. According to the Principal Investigator, Prof. Rhoda Wanyenze, strengthening data analysis and use has greatly enhanced the capacity of Ministries of Health to deliver targeted interventions that directly benefit communities. She noted that improved analytical skills at national and subnational levels now enable ministries to identify disparities in HIV, TB, and malaria burdens, while district and facility health workers can use data to strengthen local service delivery. “With better data, districts can plan more efficiently, allocate medicines, and implement tailored prevention campaigns to address specific risks, raise awareness, and reduce new infections,” she said, emphasising the role of equitable collaboration as a key success factor in Uganda and across the continent for this partnership.
Indeed, during a learning visit to Uganda in September 2024, Dr. Estifanos Biru Shargie, Senior Specialist for Monitoring, Evaluation, and Country Analysis at the Global Fund, commended the PERSuADE Project for strengthening local capacity and fostering sustainable health system improvements through South-South partnerships among schools and ministries. “The impact has been significant. In Kiboga, I was impressed by how teams mapped gaps in services and addressed them over four years, using data to inform decisions and monitor progress. Working with Makerere University School of Public Health has been an honour. The School blends academic excellence with practical implementation, backed by strong financial management and a long-standing relationship with the Ministry of Health. Their coordination, networking, and efficiency have been exemplary,” Dr. Shargie said.
Another currently ongoing initiative at the School is the African Leadership and Management Training for Impact in Malaria Eradication (ALAMIME) program, led by MakSPH with ten participating institutions across nine malaria-endemic countries, funded by the Bill & Melinda Gates Foundation. Co-led by Prof. Elizeus Rutebemberwa and Prof. Dosithée Ngo Bebe, ALAMIME is cultivating the leadership Africa needs to defeat malaria by strengthening institutions, building capacity, and fostering regional networks. In 2024 alone, the program trained over 250 participants, nearly half women, from national malaria programs, ministries, and NGOs. Through structured training, alumni-led webinars, and cross-country exchanges, the program has demonstrated how equitable, multi-country partnerships translate investment into sustainable systems and shared momentum toward malaria elimination.
For nearly 15 years now, MakSPH has also hosted the NTU–Mak Partnership, a collaboration between Makerere University and Nottingham Trent University, first conceived in 2010, with Assoc. Prof. David Musoke and Prof. Linda Gibson as the Uganda and UK Co-Leads. One of the key reasons for the success of this partnership is equity, and it has since attracted over £1.4 million in grants, trained more than 900 Village Health Teams in Wakiso District, supported over 350 practitioners in antimicrobial stewardship, and facilitated exchanges for more than 200 students and faculty. It has also equipped community health workers to respond to non-communicable diseases, antimicrobial resistance, and the COVID-19 pandemic, while generating over 30 peer-reviewed publications and convening global platforms such as the first International Community Health Worker Symposium, held in Kampala in 2017.
Dr. Musoke, the Co-Principal Investigator for the project on strengthening equitable research collaborations in Uganda, described the NTU-Mak partnership as a model North–South partnership that has produced both joint scholarship and lasting institutional ties. He noted that its success has inspired wider collaborations, as the current project on equitable partnerships builds on this foundation. Emerging from a British Academy regional workshop in Nairobi in 2024, MakSPH extended its engagement to Mountains of the Moon University (MMU), Uganda Martyrs University (UMU), and the National Agricultural Research Organisation (NARO). Together with Nottingham Trent University, these institutions are now advancing reforms to embed equity in research partnerships across Uganda’s research ecosystem.
Health
Mak and UNICEF Uganda Sign MoU to Strengthen Child Rights through Research, Training, and Innovation
Makerere University (Mak) and United Nations Children’s Fund (UNICEF) Uganda have signed a Memorandum of Understanding that launches a two-year, renewable partnership aimed at advancing child rights and well-being through rigorous research, capacity building, and policy-driven innovation.
The agreement was signed on Thursday, 14 August 2025, by Makerere Vice Chancellor Professor Barnabas Nawangwe and UNICEF Uganda Representative Dr. Robin Nandy in the Vice Chancellor’s Boardroom at Makerere’s Main Building.
The MoU enlists a focused collaboration on generating child-focused data and research to inform policy and program design, analyzing how health, nutrition, education, and protection initiatives affect children, and strengthening the social sector workforce through targeted training, curricula, and performance standards.
It also emphasizes knowledge management, wide dissemination of findings to stakeholders, policy and legislative advocacy for child rights, and active student engagement through internships, skilling opportunities, and communities of practice. The renewed partnership is designed to bolster evidence-based policy-making and drive program improvements that contribute to Uganda’s progress toward the Sustainable Development Goals by 2030.
“The signing of this MoU deepens Makerere’s long-standing commitment to the well-being of Uganda’s children and Africa’s future,” said Vice Chancellor Nawangwe. “I thank Dr. Nandy for his leadership and for the continued collaboration that will expand our capacity to deliver research with immediate, practical benefits for communities.”
UNICEF’s Dr. Nandy stressed that the partnership reflects UNICEF’s global mission to protect and promote every child’s rights while translating research into policy and action. He highlighted Makerere’s proven strength in research leadership as a critical asset in the effort to generate robust evidence for government decision-making and resource allocation.
“This partnership shows our commitment to combine academic knowledge with practical results,” said Dr. Nandy. “Using Makerere’s research skills to create important information about child welfare issues and solutions, making sure that every project we start is based on solid data and aims to safeguard and support children’s basic rights.”
The partnership builds on Makerere University’s established research strengths and UNICEF’s global mandate to protect children. It complements longstanding collaborative work through Mak’s School of Public Health (MakSPH) and other faculties, reinforcing a broader university-wide commitment to evidence-based policy and community impact.
Since 2016, Makerere has participated in more than 30 UNICEF-supported research projects, which emphasize a deep mutual trust and shared mission. The Vice Chancellor noted that this history laid a robust foundation for the new MoU while also underlining opportunities to broaden collaboration beyond the health sector.
Among the notable prior initiatives is MakSPH’s joint work with UBOS and UNICEF, supported by EU funding, on the first comprehensive Food Security and Nutrition Assessment in ten districts of Northern Uganda and the West Nile region (2019). The findings of this work informed targeted nutrition programs and strategies to combat malnutrition among vulnerable populations, shaping policy directions at local and national levels.
In 2023, MakSPH, in collaboration with the National Planning Authority (NPA) and UNICEF, along with FHI360 and the Ministry of Health, produced an updated Situation Analysis of Newborn Health in Uganda. The document has guided the ministry’s national strategy development, including costed investments to improve newborn health across the country.
Professor Rhoda Wanyenze, Dean of MakSPH, hailed the partnership as a continuation of a long-standing relationship, noting that UNICEF’s support was instrumental in establishing the Makerere University Centre of Excellence for Maternal Newborn & Child Health (MNCH) in 2013.
“It’s such a delight, a great honor to finally get to this event where we can formalize our partnership with UNICEF. The partnership between UNICEF and Makerere has been a long-standing one, and we have worked together for decades, which has driven critical research and informed national policies,” she said. She emphasized that both institutions share a passion for tackling adolescent health challenges, particularly early pregnancies and marriages, which remain persistent barriers to progress.
The MoU extends collaboration beyond the School of Public Health. The Vice Chancellor noted productive partnerships across other departments, including the Department of Journalism and Communication and the College of Humanities and Social Sciences, emphasizing how diverse disciplines can contribute to evidence-based policy and community well-being.
Another important example is the Caring for the Caregiver (CFC) intervention led by the Makerere Institute of Teacher Education and Research (MITER) in the College of Education and External Studies (CEES). This was implemented in partnership with the Ministry of Health, UNICEF Uganda, and international partners. The evaluation examined caregiver emotional wellbeing, social support, and parenting stress in rural Uganda, contributing to the growing evidence base for nurturing care in resource-constrained settings.
Also, the School of Statistics and Planning in the College of Business and Management Sciences (CoBAMS) has partnered with UNICEF to tackle urgent socio-economic and public health challenges. A key example is the Socio-economic Impact Assessment of the 2022 Ebola Virus Disease outbreak in Mubende and Kassanda districts, which examined household-level shocks, community coping strategies, and the wider disruption of livelihoods. The study’s findings have informed national policy dialogue and action planning, emphasizing that there must be stronger preparedness measures.
According to the Vice Chancellor, the university’s broader engagement with UNICEF as a driver of research, innovation, and community outreach benefits children and families throughout Uganda.
For Dr. Nandy the partnership will support student involvement in real-world operational and programmatic work, creating pipelines for young scholars to contribute to child welfare initiatives.
Both parties expressed a shared vision of translating research findings into concrete actions that strengthen child protection and opportunities for learning and development. The collaboration is expected to yield new efforts for effective interventions, sharpen the policy dialogue, and catalyze scalable innovations that improve the daily lives of Uganda’s children.
-
General2 weeks agoMary Stuart Hall Reborn: Makerere Celebrates Reopening of Historic Female Residence
-
Computing & IS2 weeks agoCoCIS CIPSD Physical & Online Short Courses Aug-Oct 2025 Intakes
-
Research2 weeks agoMakerere Scientists Document Climate-Smart Innovation in Sentema, Applaud Farmer’s Odor-Control Breakthrough
-
General2 weeks agoE-Mobility Skilling Programme: Cohort 2 Applications Now Open!
-
General6 days agoProf. Sarah Ssali Commits to Strengthen Makerere’s Teaching–Research Nexus