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.
Agriculture & Environment
Makerere Hosts Inaugural Falling Walls Lab Competition as Innovators Pitch Solutions to National Challenges
Students and researchers from Makerere University and other institutions pitched 12 innovations addressing challenges in healthcare, clean energy, agriculture, waste management and community resilience during the inaugural Falling Walls Lab Kampala, held at the School of Public Health Auditorium, Makerere University.
The competition brought together emerging innovators to present solutions to practical challenges through a three minute pitch, followed by questions from a panel of judges.
Modelled on the Falling Walls format that originated in Berlin, the event required each participant to identify a “wall” a problem or barrier, and demonstrate how their innovation seeks to break it down.
Mudhasi wins with newborn jaundice screening device
Andrew Mudhasi of Makerere University emerged as the overall winner with a score of 90 per cent for a low cost medical device designed to improve newborn jaundice screening across different skin tones.
Mudhasi explained that the device uses optical sensor technology and a skin tone targeting algorithm to provide a rapid reading, with the aim of helping nurses and clinicians identify jaundice more efficiently.
During questions from the jury, Mudhasi said the device had not yet been tested on actual babies but had undergone laboratory testing using simulated skin tones.
He reported an accuracy rate of 94 per cent when the device was compared with laboratory spectrophotometers.
The innovation is intended initially for use in clinics and hospitals, with Mudhasi saying the team is also considering a version that could eventually allow mothers to screen babies at home.
Mudhasi’s innovation has previously received recognition at the African Business Concept Challenge and the iF Design Student Award, according to his presentation.
Rhonda’s innovation tackles diaper waste
Rhoda John of the University of Nairobi emerged in second place with 89.6 per cent for an innovation addressing the problem of used diaper waste.
Under the theme “Breaking the wall of diaper waste and drug soils,” Rhonda explained that her team extracts sodium polyacrylate, the absorbent polymer found in diapers, and replaces the sodium with potassium.
The resulting potassium based superabsorbent material is designed to act as a “water battery” in soil by absorbing and retaining water for plants during dry periods.
John said testing showed a 99 per cent increase in germination and a 23 per cent increase in drought resistance.
The innovation also seeks to reduce the amount of used diapers ending up in landfills and the environmental effects associated with their decomposition.
During the question and answer session, John explained that her team was working with government environmental officials in Nairobi on a pilot collection system to address the challenge of gathering used diapers at scale.
Mahera takes third place with herbal peptic ulcer treatment
Stuart Mahera of Makerere University finished third with 86.2 per cent for a herbal formulation targeting peptic ulcers.
Presenting under the theme “Breaking the wall of Nature and Modern Medicine,” Mahera argued that conventional treatment for peptic ulcers can involve multiple medicines and may be associated with side effects and antimicrobial resistance.
His proposed formulation, MARAC capsules, is intended as a monotherapy, combining properties required for peptic-ulcer treatment in a single capsule.
Mahera said his team had carried out quality control work, including characterisation and dose quantification, and had conducted preclinical trials on laboratory mice.
He also told the jury that an application had been submitted to the National Drug Authority as the team awaits the next stage of the regulatory process.
According to Mahera, the proposed seven day treatment would cost about Shs21,000, compared with the existing 14 day treatment approach.
Innovators present solutions to practical challenges
The remaining presentations covered a wide range of challenges.
Esther Nakungu of Utamu University presented Agri-Track, a digital record keeping solution intended to improve visibility, accountability and management of farm operations and financial information.
Dr. Jimmy Chachiga, a Makerere University participant, presented a solar photovoltaic cooker with a heat storage system designed to provide a cleaner and more reliable cooking option during both sunny and non sunny periods.
His presentation focused on reducing dependence on biomass fuels and addressing the challenges associated with intermittent solar energy.
Abdul Noor Luttamaguzi, a PhD student and senior government fisheries officer, presented a mobile application aimed at helping fish farmers and extension officers report, track and manage disease outbreaks.
Henry Duke Tamale presented a herbal cream targeting antibiotic resistant biofilm infections associated with diabetic foot ulcers.
Marvin Seruwu proposed adapting existing near infrared brain monitoring technology to help detect extra-axial brain bleeds in health facilities where access to CT and MRI equipment is limited.
His proposal seeks to repurpose existing technology towards a diagnostic need that could be particularly important in settings where advanced imaging facilities are not readily available.
Kennedy Kisame presented a poultry alert and diagnosis system combining satellite weather information with computer vision disease detection. The proposed system could be accessed through a smartphone application, SMS or USSD, making it potentially usable by farmers with limited internet access.
Frank Atwiine proposed a solar powered mobile diagnostic van designed to bring ultrasound and other diagnostic services closer to rural communities.
Johnson Makmot, a software and blockchain developer, presented a platform that combines GPS tracking and blockchain-based tokens to incentivise and verify plastic-waste collection in Kampala.
Dr. Nelson Ndugu, from a partner university, presented an artificial intelligence tool designed to translate agricultural research publications into local Ugandan languages and generate voice notes for radio-based extension delivery.
The final presentation came from Dr. Juliet Akola, a Ugandan post doctoral researcher at Mangosuthu University of Technology in South Africa.
Akola presented a community digital resilience initiative focused on mapping risks in Kampala’s informal settlements, including flooding, fire, poor sanitation, waste management and inadequate infrastructure.
Her proposal seeks to combine local community knowledge with geographical information systems and link identified risks to action plans involving municipalities and other stakeholders.
Nawangwe calls for more investment in innovation
Closing the event, Prof. Nawangwe congratulated all the participants and described their presentations as an important beginning for Makerere University, Uganda and the wider region.
Drawing on his experience attending the Falling Walls conference in Berlin, the Vice Chancellor said initiatives of this nature are important because innovation will play a major role in determining the future of countries.
He encouraged participants to make their pitches more precise by clearly identifying the problem they are addressing, explaining their proposed solution and demonstrating what they have already achieved.
Prof. Nawangwe also welcomed the participation of innovators from other universities and countries, noting that the Kampala event had attracted participants beyond Makerere.
He thanked the Africa Office of the Falling Walls Foundation for its role in bringing the initiative to Makerere and encouraged continued support for innovation.
The Vice Chancellor further linked innovation to Uganda’s growing youth population and the need to develop home-grown solutions to address challenges such as youth unemployment.
The inaugural Falling Walls Lab Kampala ultimately provided a platform for innovators to move ideas beyond the classroom and laboratory and demonstrate how research, technology and creativity can be applied to challenges affecting communities.
| Position | Winner | Institution | Score |
| 1st | Andrew Mudhasi | Makerere University | 90% |
| 2nd | Rhoda John | University of Nairobi | 89.6% |
| 3rd | Stuart Mahera | Makerere University | 86.2% |
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