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.
By Okeya John and Primrose Nabankema
The intensive one-month course, running for the first time from June 5 to July 24, 2025, is jointly offered by Makerere University School of Public Health (MakSPH)’s Department of Community Health and Behavioural Sciences (CHBS) and the Department of Journalism and Communication (DJC) at the School of Languages, Literature, and Communication (SLLC), co-designed in 2024 with support from the Rockefeller Foundation through Amref Health Africa.
It seeks to equip healthcare providers at the community level, public health and environmental health practitioners, communication specialists, health educators, community development officers, social scientists, and policy makers, among others, with strategic communication skills to improve public health messaging, strengthen community engagement, and support evidence-based interventions, ultimately empowering participants to effectively engage communities and improve population health outcomes across Uganda and the region.
Launching the course, the heads of the Department of Journalism and Communication and the Department of Community Health and Behavioural Sciences noted that participants who complete the short course will gain practical tools to influence behaviour change, build trust, and deliver timely, accurate, and relevant health information to the communities they serve. The first cohort attracted more than 60 applicants, with 36 reporting for the opening in-person session on June 5, 2025, at MakSPH in Mulago. Between now and July, participants will undergo a hands-on, multidisciplinary learning experience within the Certificate in Health Communication and Community Engagement program, which combines theory and practice.
Among the participants in the first cohort of the certificate course, designed as a pilot for the anticipated Master of Health Promotion and Communication to be jointly offered by the two departments at Makerere University, is Ms. Maureen Kisaakye, a medical laboratory technologist specialising in microbiology and antimicrobial resistance (AMR), and currently pursuing a Master’s in Immunology and Clinical Microbiology at Makerere. She is driven by a passion to help reverse the rising tide of AMR, a growing global health threat where drugs that once worked are no longer effective. Kisaakye is particularly concerned about common infections, like urinary tract infections, becoming increasingly resistant and harder to treat.
“I enrolled in this course because I’m an advocate against antimicrobial resistance, and it came at a time when I needed to deepen my knowledge on how to implement our projects more effectively and engage with communities. The experience has broadened my understanding of AMR and its impact on society, and strengthened my passion for community-driven health initiatives and advocacy,” Kisaakye said, explaining why she enrolled for the short course.
Kisaakye’s work in antimicrobial resistance extends beyond the lab. Having earned her degree in medical laboratory science from Mbarara University of Science and Technology, she founded Impala Tech Research in 2024 to drive impact and save lives. She has led grassroots AMR campaigns that integrate antimicrobial stewardship with water, sanitation, and hygiene (WASH) education in underserved urban communities, including the informal settlements in Kampala. She also has since designed peer-led initiatives that empower university students as AMR Champions, building a network of informed youth advocates. Kisaakye believes the health communication course will sharpen her ability to design and deliver impactful, community-centred interventions in response to the growing threat of drug resistance.
“The department collaborates with many partners within and beyond the University, including the School of Public Health, where we are working to develop the subfield of health communication and promotion. Our goal is to train specialists in this area and build a community of practice, something we have each been doing in our own spaces. There’s a lot of work ahead, and COVID-19 showed us just how urgently we need a generation trained to do this kind of work, and to do it very well,” said Dr. Aisha Nakiwala, Head of the Department of Journalism and Communication, during the opening of the short course on June 5.
She assured participants they were in good hands and underscored the importance of the partnership between the Department of Journalism and Communication and the School of Public Health, describing it as a vital collaboration that brings together strategic communication and public health expertise. This dynamic, multidisciplinary approach, she noted, is essential to developing practical solutions that empower communities, strengthen health systems, and ultimately improve livelihoods.
The course offers a hands-on, multidisciplinary learning experience, with participants intended to explore key modules including Health Communication and Promotion, Risk Communication, Smart Advocacy, Community Mapping, Community Mobilisation and Empowerment, and Strategies for Community Engagement. The course combines theory with real-world application, and its assessment includes a field-based project and a final exam.
“You are our first cohort. We are seeing the fruits of our efforts in bringing this short course to life. It was born out of a joint initiative to develop a Master’s programme in Health Promotion and Communication,” said Dr. Christine Nalwadda, Head of the Department of Community Health and Behavioural Sciences. “We carried out extensive consultations with our different key stakeholders during the process and discovered a real need for such a course. It was the stakeholders who even named it; this course name didn’t come from us.”
For Kisaakye, by the end of the course in July, she hopes to have sharpened her skills in health promotion and strategic communication, particularly in crafting targeted messages that help individuals and communities effectively respond to threats such as antimicrobial resistance. She also aims to gain practical experience in designing, implementing, and evaluating community health initiatives that can strengthen her advocacy and drive lasting impact.
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