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 2nd December 2024, Assoc. Professor Bruce Kirenga officially took over as Principal of the College of Health Sciences, Makerere University (MakCHS) in a handover ceremony held in the College Board Room. Dr. Kirenga succeeds Professor Damalie Nakanjako, who successfully completed her four-year term.
The ceremony was attended by members of the MakCHS Administrative Board and key university leaders, including Ag. Deputy Vice Chancellor (Finance and Administration) Professor Henry Alinaitwe, Chief of Human Resources, Mr. Deus Tayari Mujuni, & Deputy University Secretary Mr. Simon Kizito, among others.
In her remarks, Professor Nakanjako reflected on her time in office with gratitude and pride since she assumed office in December 2020. She expressed her full support for MakCHS in contributing towards training and research in Makerere University.
Professor Nakanjako thanked the university top management for the support rendered to during her term of office as Principal. I thank family, friends and colleagues who supported and allowed me share my time with the college, especially beyond official hours.
Dr. Kirenga, a pulmonologist, researcher, and founding director of the Makerere University Lung Institute, expressed his heartfelt gratitude to the Makerere leadership and the search committee for entrusting him with the responsibility of steering the college. He noted; “It’s a true honour to have been entrusted with this role. The search process was rigorous, but I learned so much from the ideas shared by my colleagues—it was a truly honourable competition.”
With a vision for collaboration and growth, Dr. Kirenga outlined his priorities, including improving staffing, improving relationships with teaching hospitals, and addressing infrastructure needs. He emphasized a leadership style rooted in inclusivity and teamwork, saying, “Let’s create a common vision through consultation and work together. I’ll visit every unit in the college to hear directly from staff about their challenges, needs, and ideas for moving forward.”
Dr. Kirenga also shared plans to establish a forum of past leaders to harness their collective wisdom and ensure continuity in leadership.
Four Makerere University School of Public Health (MakSPH) faculty have been inducted for the 2024 Uganda National Academy of Sciences (UNAS) fellowship, a preeminent nation’s most respected scientific bodies. This is the first time MakSPH is scooping a large number of faculty fellows, which was the highest for a single institution. This prestigious honor was awarded on Friday, November 1, 2024, at Four Points by Sheraton Kampala, Uganda.
The recipients are;
⦿ Professor David Guwatudde, a Professor of Epidemiology and Biostatistics at the MakSPH where he has been teaching for over 32 years. In the last decade, Dr. Guwatudde’s research interest has been on characterising the epidemiology, evaluattion and effectiveness of appropriate interventions for prevention and control of selected non-communicable diseases (NCD) especially diabetes and hypertension.
⦿ Dr. Fredrick Edward Makumbi, an Associate Professor of Biostatistics at MakSPH in the Department of Epidemiology and Biostatistics. A seasoned public health professional in Uganda, he is also a Gates Fellow. Through his expertise in population health and the evaluation of public health interventions, Dr. Makumbi has generated significant evidence that impacts the field. He has published over 300 journal articles and leads the PMA project, which focuses on evaluating schistosomiasis and family planning initiatives in Uganda.
⦿ Dr. David Musoke, a Senior Lecturer in the Department of Disease Control and Environmental Health at MakSPH. He serves as the Chair of the Grants and Research Capacity Building Committee at MakSPH and is the President Elect of the International Federation of Environmental Health (IFEH). A graduate of Makerere University, his research interests include environmental health, malaria prevention and community health. He organized the first International Community Health Workers symposium which was held in Uganda, and is an academic editor and reviewer for several journals.
⦿ Dr. Victoria Nankabirwa, an experienced clinical researcher and Lecturer in the Department of Epidemiology and Biostatistics at MakSPH. She holds a PhD from the University of Bergen and is also a member of the WHO Immunization and Vaccine-related Implementation Research (IVIR) Advisory Committee. Her key interests include mother and child outcomes, particularly survival and the impact of immunization.
UNAS is an independent, non-profit, and non-political organization, established and founded in October 2000 to provide Uganda with credible, balanced, and evidence-driven guidance on matters of science and development. Membership is drawn from distinguished scientists and scholars who have made significant, lifelong contributions across diverse fields, including natural and social sciences, arts, and humanities.
The UNAS Fellowship remains one of the nation’s most respected scientific bodies, with over 200 members working collaboratively in interdisciplinary and transdisciplinary fields to address Uganda’s challenges through science and innovation.
Every year, Fellows of the Uganda National Academy of Sciences (FUNAS) have an opportunity to nominate potential fellows into the academy based on their merit, impact and contribution of the world of Science. A nomination stands substantive once it is seconded by another FUNAS, after which the nominees go through a rigorous selection process by a highly competent committee of scholars in the academy.
Once selected and inducted, fellows in the academy devote their time on honorific activities and service provision through arbitrating on contentious national debates such as whether to provide free social services to refugees and whether to use DDT to control Malaria. Since inception on October 20, 2000, the UNAS has distinguished itself as a premier honorific society for eminent scientists in Uganda. It leverages on the expertise and stature of its members to provide pro bono evidence-informed advice to government and Ugandans on science, technology, innovation and sustainable development.
Dr. David Serwadda, an Exemplar Scholar of Makerere University who this year received the prestigious Professor Emeritus title presented the new fellows to the UNAS convention. He described Dr. Nankabirwa as a prolific researcher, with over 80 publications in peer-reviewed journals and an impressive funding portfolio that includes a number of highly competitive research grants.
On her part, Dr. Victoria Nankabirwa said she was grateful for the recognition and pledged to uphold UNAS values.
“I am very thankful for this recognition, and as I reflect on the journey that has brought me to this point, I am reminded that this is not the result of solitary work but of shared aspirations, collaborations, and partnerships. As such, I am very thankful to my nominators and seconders, Prof. David Serwadda and Prof. Rhoda Wanyenze, as well as to my colleagues, my students, and my family, represented by my mum. To these people and to you, I extend my deepest gratitude. I pledge to uphold the academy’s values, advocate for science-driven policies, and mentor future generations. I will work as hard as I can within this FUNAS,” said Dr. Nankabirwa.
Dr. Fredrick Edward Makumbi expressed his gratitude and commitment during his recent induction as a fellow of the Uganda National Academy of Sciences (FUNAS). “I am delighted to have been nominated and accepted as a FUNAS. I am truly appreciative and acknowledge the support of all those who have helped me, from my family to my teachers and colleagues—many of whom are here today. They have supported me and brought me to this great podium. I pledge to continue working, supporting, and promoting the health and well-being of the people of Uganda and beyond through science, as well as mentoring others to ensure a sustainable generation that can uphold the health and well-being of Uganda and beyond. I am glad to be here, and thank you very much,” Dr. Makumbi stated.
Dr. David Musoke is a promising researcher and Senior Lecturer in the Department of Disease Control and Environmental Health at Makerere University’s School of Public Health. He serves as the Chair of the Grants and Research Capacity Building Committee and is the President Elect of the International Federation of Environmental Health (IFEH).
“I am really delighted and humbled to be joining this elite class of academics and scholars as a fellow of UNAS. It is an honor to join many of my mentors from over the years, including my very own father, who is also a fellow of UNAS and is here today, Prof. Miph Musoke. I wish to thank my family—my parents, wife, and children—for all their support, as well as the research teams we have worked with,” said Dr. David Musoke.
Adding that; “I also extend my gratitude to my mentors from the university, Professor David Serwadda and Professor Rhoda Wanyenze, for nominating me, along with all the others who have contributed throughout this journey, including funders, collaborators, the community, and everyone else we work with. I look forward to serving in this capacity and upholding the goals and aims of UNAS, especially in the field of Environmental Health and Community Health.”
Professor Guwatudde, a lead investigator in two national surveys assessing non-communicable disease (NCD) risk factors in his country—first in 2014 and again in 2023—expressed his commitment to tackling NCDs as he was recognized by the Uganda National Academy of Sciences (UNAS).
“I would like to thank the UNAS council, the secretariat, and all members for accepting me as a member,” Prof. Guwatudde said.
“I pledge to contribute in the area of non-communicable diseases. We have conducted extensive research in this country, giving us a clear picture of the NCD burden, a reality that affects us all. I would be glad to share this insight with fellow members,” added Guwatudde.
National academies worldwide provide neutral platforms for experts across disciplines to tackle societal challenges and clarify emerging issues in science, technology, and policy. These institutions play a crucial role in preparing for and responding to global threats such as pandemics. Since its inception, the Uganda National Academy of Sciences (UNAS) has been led by four presidents: Prof. Paul Mugambi (2000-2014), Prof. Nelson Sewankambo (2014-2019), Prof. Peter Mugyenyi (2019-2022), and, since October 2022, Prof. Grace Bantebya-Kyomuhendo, a Professor of Women and Gender Studies at Makerere University—the first female head of the academy.
Prof. Bantebya extended her congratulations to the newly inducted fellows. She emphasized the responsibilities UNAS fellows carry, including upholding the academy’s constitution and contributing to its vision, mission, and objectives. “Our fellows play a critical role in advancing the academy’s goals, and their dedication is vital to our impact on science and policy,” Prof. Bantebya stated.
“Remain academically active. Please listen to that. In meaningful pursuit of academic excellence in your respective areas of expertise. Do not say that now that you have become a fellow, you will stop being academically active. We expect you to continue,” she emphasised.
She also called on the fellows to actively participate in the academy’s conventions, consensus-building efforts, and other activities. Prof. Bantebya emphasized the importance of consensus studies to the academy’s mission, urging fellows to make themselves available when called upon.
“Ensure high standards of conduct based on national and international best practices. We expect you to maintain and ensure high standards yourselves and foster good relations among members as well as with the academy, the general science community, and the public. You also need to meet all the obligations as a fellow of UNAS, whether financial or otherwise, as stipulated,” the Academy President said
A fellow may lose their membership in the academy if they act against the UNAS constitution or bring disrepute to its goals, name, or vision. Membership can also be terminated if a member is convicted by a competent court or authority of a felony or serious crime, or if they are declared bankrupt or of unsound mind.
UNAS’s mission is to foster the welfare and prosperity of the Ugandan people by generating, sharing, and utilizing robust knowledge and insights to deliver independent, merit-based scientific counsel to government and society. As part of the global scientific community, UNAS maintains strong ties with the Network of African Science Academies (NASAC), Network of Science Academies in Islamic Countries (NASIC), the U.S. National Academies, IAP, and TWAS.
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