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.
Health
Makerere University Public Health students recount hands-on experience in Ebola case finding in Uganda
On Tuesday January 14, 2025, under the radiant rays of the Ugandan sun, Laura Silovsky crossed the stage at Makerere University’s 75th Graduation Ceremony to receive her master’s degree in Public Health Disaster Management (MDM). Hers is a story of passion, dedication, and curiosity to rewrite the narrative of global education. Among 1,813 master’s graduates, Laura’s story stood out, as a blend of refugee roots, firefighting bravery, and a drive to decolonize learning.
Laura’s journey began long before her arrival in Kampala. Born in the UK to a father who fled from Czechoslovakia’s dictatorship in the 1970s, she grew up understanding displacement intimately. “My father was a refugee. Why would I fear refugees?” she once asked during her research fieldwork in Uganda’s West Nile, where her empathy bridged divides.
“People in Uganda may not expect that a muzungu could be the child of a refugee, but my family experienced displacement from (what was then) Czechoslovakia as well as the effects of the protracted conflict in Northern Ireland. Fortunate to have been born in the UK, I was raised to appreciate that disasters can affect anyone, anywhere, anytime.
After studying Sustainable Development at the University of Edinburgh, I worked on a behavior change project tackling non-communicable diseases in Scotland,” Laura says.
Her journey twisted through battling Australia’s bushfires and volunteering in a COVID pandemic, but it was Uganda’s welcoming refugee policies and Makerere University’s academic excellence that pulled her in next.
“In 2020, I relocated to Australia, just after the worst bushfires since records began and before the COVID-19 pandemic. The following two years, I qualified as a firefighter and supported bushfire recovery by volunteering with a community-based organization. After gaining some insight into these different disasters, I made the decision to return to higher education, and so I applied for the MDM programme at Makerere in 2022,” says Laura.
Armed with experience in emergency response, Laura was drawn to the field’s multidisciplinary nature and was convinced she needed to expand her expertise beyond immediate recovery efforts. She aimed to explore the full disaster management cycle and the intricate connection between health and environment.
“I needed to combine gaining academic knowledge with developing practical skills, so the field placement offered within the master’s degree in Public Health Disaster Management programme was a major motivator for me,” she shared.
The love for Uganda
Studying at the University of Edinburgh, Laura took a class in Kiswahili, that included a field-based short course on the Tanzanian shores of Lake Victoria. This experience sparked a desire to spend more time in the region, but she knew she needed to expand her skill set in order to genuinely add value to an organisation, if she was on the continent.
“I hoped studying at an East African university would teach me invaluable soft skills needed to work more effectively as an international team member. Makerere University School of Public Health (MakSPH) has a strong reputation, and I wanted to study somewhere that was locally grounded but globally recognized. Uganda’s progressive refugee policies were an added incentive to learn from experts here,” Laura says.
Laura’s intentional choice to decolonize her education
“I came to Uganda to learn from the experts here,” Laura declared, rejecting Eurocentric frameworks. “A big factor for me wanting to study at Makerere University was to decolonize my education, to recognize that the knowledge about responding to public health disasters and supporting refugees is here in Uganda,” she says.
She adds, “When I first arrived, I was quite vocal with my classmates about wanting to challenge that bias and truly acknowledge the wealth of knowledge within institutions like Makerere. The expertise here is invaluable, and I was intentional about decolonizing my education.”
At MakSPH, Laura immersed herself in courses like epidemiology, struggled briefly with statistics, but thrived on critical discussion groups and consultation with lecturers.
Collaborating with classmates from Uganda and across East Africa, she learned Luganda phrases and Somali proverbs, and built a “family” united by late-night study sessions and shared ambitions.
Beyond expectations
For Laura, studying at MakSPH was the best decision she could have made. She is still struck by the faculties’ wealth of academic and professional experience in public health and disaster management.
“I anticipated the programme would focus on applying the knowledge we gain to real-world scenarios. Of course, there were cultural differences that took me time to adjust to. I am grateful to faculty members such as Prof. Christopher Garimoi Orach, for his dedication and support, Prof. Elizeus Rutembemberwa for leading by example and valuing students’ time, and Dr. Justine Bukenya and Dr. Simon Kibira for offering their extensive support as my dissertation supervisors.”
The Fieldwork Attachment that Transformed Laura’s Research Experience
At Rhino Camp refugee settlement in West Nile, Laura’s work took on new meaning. Partnering with the Uganda Red Cross Society, she helped digitize data tools and walked long distances through Tika Zone, inspecting latrines and speaking with South Sudanese girls about their challenges in managing their menstrual health through their project that focused on schools.
“That experience in West Nile influenced my own research ideas, and it was a privilege to later return to Rhino Camp for data collection. I will always remember the long days walking with my research assistants through villages and being graciously welcomed by so many respondents,” she recalls, noting that the experiences crystallized her resolve to advocate for refugee dignity globally.
Life in Kampala
Life in Kampala, with its vibrant energy and unique challenges, was truly a ‘full sensory experience’ for Laura. “My parents live in a small village, so Edinburgh felt like a big city when I moved there. And Edinburgh is much smaller and quieter than Kampala! But on weekends, I loved going downtown to shop at Owino Market or heading to Kyadondo Rugby Club for some pork.”
These spaces were perfect for Laura, offering new cultural experiences, including matooke, a starchy dish not found in the UK, which is mainly eaten in Uganda as a local delicacy and staple meal. Despite the differences in culture, sharing meals with classmates provided Laura with a comforting sense of connection.
Back to academics, navigating the university administrative processes wasn’t seamless initially for Laura, though. She says administrative hurdles such as paper-based systems, could change for the university to comfortably enjoy its strong reputation.
She recalls, right at the beginning, when she couldn’t find sufficient information online to support her to complete her application to join Makerere University. However, she later received support from the University’s International Office that deals with the welfare of international students.
Other university officials, from finance, librarians, program administrators, to academic registrars, played a key role in supporting her in her research and postgraduate training. “The system relies on dedicated individuals,” she noted, calling for digital reforms while praising MakSPH’s “atmosphere of innovation.”
“From my experience, such as when obtaining my transcript, the system relies heavily on individual staff members working around these administrative challenges. I’m grateful for those who helped me navigate this, and I’m interested to see how the university continues its digital transition, as it could greatly streamline processes in the future,” says Laura.
A Bittersweet Graduation Day
On graduation day, Laura’s pride mingled with melancholy. Watching families cheer on graduates, she reflected on classmates sidelined by finances or family crises.
Having gone through the course and interacted with Ugandan students, Laura hints on the common financial and personal challenges preventing many from graduating: family illness, new children, sponsorship falling through.
“I know so many of my classmates had worked so hard and were almost over the finish line but, due to financial challenges or other commitments at home, it wasn’t possible for them to graduate this year,” she says.
“For me, I was able to make the choice to pursue this program before having children, so I had fewer responsibilities at home, and I had also been saving for many years to get the money to pay tuition. Because I knew I had the money for tuition before I started, I could focus on studying. As you know, the reality for many people is that that’s not always possible.
“Small supports can transform student experiences,” Laura emphasized, advocating for systemic empathy. She sees great potential for more pastoral support at the university, citing peers from UCU and Kyambogo who benefited from accommodations like private breastfeeding spaces and flexible deadlines in special circumstances. Such initiatives, alongside financial aid, could significantly improve student welfare.
Still, the ceremony’s electric energy—watched via livestream by her parents in Europe—symbolized hope. “Uganda taught me that collaboration transcends borders,” she reflected.
“You could feel this sense of how hard everyone had worked to reach up to that point and that this was really an opportunity for them to celebrate, particularly by having family and friends around to be able to see. I love the PhD awards, when you see the PhD students coming out and their families rushing up to greet them. To me, that’s the best part of the ceremony, because a PhD requires so much work and commitment, and I think it’s really emotional to see everyone share this moment with their support networks,” she says.
Adding that; “…I was so grateful that the ceremony was streamed online. My family were watching live at home in Europe and it was so special that they could see me on camera and participate in the ceremony that way as well.”
Laura noted striking similarities between Makerere and Edinburgh’s ceremonies, especially the moment when students were asked to turn and thank their families, an emotional and powerful tradition.
Looking Ahead
Now in Tanzania, Laura eyes roles with international NGOs, armed with Ugandan-taught pragmatism and a zeal to challenge Europe’s refugee policies. “MakSPH gifted me more than a degree—it reshaped my worldview,” she says.
“As a muzungu with a Ugandan postgraduate education, I feel privileged to have benefitted from different educational perspectives, and I hope that the skills and knowledge I acquired during my time at Makerere will help me to secure a role with an international NGO. After witnessing the incredible support that Uganda provides to refugees, I also hope to advocate for more dignified policies concerning refugees in Europe,” she shares.
“There’s a spirit of innovation and dedication at Makerere, particularly when passionate lecturers like Prof. Orach, Dr. Roy Mayega, or Dr. Victoria Nankabirwa engaged students through discussion and sharing lived experiences. You could really see a different level of engagement within the students as well. Overall, I’ve had such a fantastic experience at Makerere University.”
“I wouldn’t change a thing,” she smiles.“Except maybe convince more Europeans to study here. Africa’s wisdom is the future.”
-
General1 week agoCall for Applications: Admission to Postgraduate Programmes 2025/2026
-
Engineering, Art & Tech2 weeks agoCall for Applications; Makerere University – University of Groningen Erasmus+ Programme (2021 – 2027)
-
General2 weeks agoPrincess Zahra Aga Khan Visits Mak, Tours Innovation Pod
-
General4 days agoExtension of Applications for Diploma/Degree Holders for Govt. & Private Sponsorship AY 2025/2026
-
Education2 weeks agoMakerere University academic staff trained on new Competency Based Curriculum