A collage of speakers and participants at the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala.
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. Fredrick E Makumbi, Associate Professor and a Ugandan Principal Investigator speaking at the dissemination meeting.
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.
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.
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.”
Dr. Daniel Kyabayinze, the Director of Public Health at the Ministry of Health -Uganda during the dissemination meeting at Golden Tulip Hotel in Kampala.
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.
Dr. Sarah Nekesa, Executive Director of Epilepsy Support Association Uganda at the dissemination meeting.
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.
Participants in a group photo at the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala.
I am pleased to present our annual report. Throughout the past year, MakSPH-METS Program has remained steadfast in its mission to strengthen Uganda’s capacity for HIV and TB programming through strengthening robust health information systems, surveillance, and quality improvement initiatives.
MakSPH leverages its team of expertise in public health to guide program strategies, strengthen national capacity for data collection, analysis, and use. The innovations developed are solutions for health system challenges and they generate evidence that can be used to inform policy and practice.
MakSPH-METS provides technical support to MoH, RRHs, implementing partners at different health system levels.
Our collaborative approach, working closely with the Government of Uganda and various stakeholders, has enabled us to make significant strides in building sustainable health information systems and improvingthe quality of healthcare delivery. The achievements highlighted in this report reflect our commitment to strengthen health systems through development and implementation of innovative and impactful evidence- based solutions.
As we look to the future, I am confident that the METS Program will continue to play a pivotal role in strengthening Uganda’s health systems through several initiatives.
Operationalising a sustainability plan through transitioning of the developed innovations to the Ministry of Health for ownership.
Disease outbreak management will be strengthened through continued capacity building for emergency response and optimization of existing integrated disease surveillance systems. The field teams will facilitate seamless coordination across health system levels to build sustainable and resilient health systems capable of effectively responding to public health emergencies.
Lastly, we continue to strengthen collaboration with government, enhance coordination with implementing partners and promoting integration of health services.
Our dedicated team of professionals, combined with the unwavering support from our partners and stakeholders, positions us well to address emerging health challenges and advance our nation’s public health goals. The innovative solutions and capacity-building initiatives highlighted in this report demonstrate not only our progress but also our potential for greater impact in the years ahead.
Makerere University Biomedical Engineering Unit under the Department of Physiology is glad to advertise for positions under its new Project ‘KeyScope Project: The Key to Sustainable Cancer Diagnosis and Treatment in Uganda.”
Laparoscopic surgery is considered as the standard of care for cancer treatment in high-income countries. However, this technology is rarely accessible to LMICs due to the high cost of installment, lack of maintenance personnel, unreliable electricity, and shortage of consumable supplies. To address these concerns, a unique multidisciplinary collaboration between engineers, surgeons, oncologists, and business experts from Duke University, Makerere University, Uganda Cancer Institute and University of Maryland joined efforts to develop a low-cost, durable laparoscopic system (KeySuite) for use in resource- constrained environments.
Our aims are aligned to demonstrating the local capacity to manufacture, acquire local and international regulatory approval, determine clinical performance and distribute/sell the KeyScope to the local market. Specifically, we shall improve the current design and determine the local capacity to manufacture the device, establish the clinical safety and acceptability of the product, and obtain regulatory approval from local and international accredited bodies.
Position: Junior Research Fellow
Reports to: Project Coordinator
Engagement: Full time
Duration: 1 year renewable upon satisfactory performance
Duty Station: Kampala
Roles and responsibilities
As a trainee, a Junior Research Fellow will closely work with a research team to undergo training design, manufacturing and validation of the KeyScope. This is a non-degree/no-credit training opportunity that will prepare the successful candidate for advanced studies and future industry work in an upcoming medical technology sector of Uganda and Africa at large.
Specifically the Fellow will;
Participate in the local construction of the KeyScope through material assessment and selection, developing a product manufacturing plan, and carrying out an impact assessment.
Aid in the establishment of clinical safety and acceptability of the KeyScope through the use of a feasibility study to secure approvals, recruit patients and surgeons.
Contribute to the process of attaining regulatory approval from a certified body for the KeyScope.
Contribute to the development of a commercialization plan under training and mentorship of a Business Developer.
Actively engage in project documentation, questionnaire and ethics protocol development, journal article writing and publication, report writing.
Conduct key informant interviews, administer questionnaires, and verbatim transcription of interview recordings.
Participate in data collection and analysis using digital and paper-based tools.
Participate and contribute to teaching and student mentorship.
Engage with the research partners and stakeholders.
Any other activities as assigned by the Principal Investigator, and Project Coordinator (Immediate Supervisor) from time to time.
Qualifications:
Completed a Bachelor’s Degree in Biomedical Engineering or any closely related field and at least awaiting graduation in not more than 6 months from an accredited University in Uganda.
If completed, candidate must not have graduated more than 1 year ago.
Academic qualifications of having attained or expecting at least expecting a second-class upper division degree.
Experience in Human-Centered Design skills and Design Thinking will be highly considered.
Prior experience in working with international multidisciplinary teams and organizations.
Experience of previous work on laparoscopy is a plus.
Evidence of prior interest for research, design, innovation and medical device manufacturing.
Applicant should have a desire to work with different fabrication techniques.
Ability to multitask and perform duties in learning environment with minimum supervision
Excellent scientific writing skills and a good command of communication skills.
How to Apply:
All suitably qualified and interested candidates should submit a one-page cover letter, one-page writing sample, CV (maximum 3 pages) with relevant certificates, transcripts & two reference letters as a single digitally signed PDF file addressed to the Project PI and emailed to keyscopeu01@gmail.com by 17:00hours on 18th April 2025. Indicate, “KeyScope Project” in the subject line. Those awaiting graduation should send their most recent testimonials. Only shortlisted applicants will be contacted.
Makerere University School of Public Health (MakSPH) is honored to host a distinguished delegation from Karolinska Institutet (KI) for a two-day administrative exchange, part of our 25 years of a flourishing partnership between Makerere University (Mak) and Karolinska Institutet.
Fostering Administrative Synergies
The visiting team, led by Therese Lind, head of administration at KI’s Department of Global Public Health, comprising HR specialist Sofia Öhlund-Fingal, Sonia Hammi, project manager, Kseniya Hartvigsson, communications officer CESH, and Anna Hansson, project manager, Grants Office—engaged in:
Discussions on research administration and financial management
Knowledge sharing on operational challenges and best practices
Exploring funding opportunities with major donors
The visit covered grants management, procurement, financial systems, and joint application strategies to enhance efficiency and academic exchanges. The team also toured key university facilities, including the historic Main Building, the state-of-the-art MakSPH auditorium, and the construction site, to witness the institution’s growth.
A Legacy of Collaboration
Since 2000, this partnership, Mak-KI, has yielded:
49 PhD graduates through the Sida-supported doctoral program
Reciprocal exchanges benefiting 254 students and 153 faculty members
The Centre of Excellence for Sustainable Health, established during the pandemic
This visit reinforces our commitment to strengthening institutional capacity and driving impactful research. We extend our sincere appreciation to the KI team and look forward to continued collaboration.