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 Researchers Find Psychological Therapy Effective in Improving Diabetes Care in Uganda
By Nelson Bahati
Researchers from Makerere University‘s School of Psychology have found that psychotherapy intervention can improve the well-being of adults living with Type II diabetes mellitus, opening the door for integrating psychosocial support into diabetes care in Uganda.
The findings were disseminated on 16 June 2026 during a research dissemination workshop held at the Physiology Lecture Theatre at the College of Health Sciences, Mulago Hospital.
Led by Professor Peter Baguma, the study titled “The Effectiveness of Cognitive Behavioural Therapy for Diabetes Distress, Depression, Health Anxiety, Quality of Life and Treatment Adherence among Adult Patients with Type II Diabetes Mellitus” investigated whether Cognitive Behavioural Therapy (CBT), a psychological treatment that has proven effective in Western countries, could also work in the Ugandan context.
Presenting the findings, Professor Baguma said the study was motivated by the growing burden of diabetes and the psychological challenges that often accompany the disease but are rarely addressed in routine healthcare.
“Diabetes affects many people in Uganda and across the world. It kills, and those who live with it face many challenges. While psychological interventions have been developed and applied in the Western world, we did not know whether these approaches could work in Uganda. That is why we decided to undertake this study,” he said.
He explained that Cognitive Behavioural Therapy focuses on changing negative thoughts and behaviours that affect people’s wellbeing and ability to manage chronic illnesses.
The researchers sought to determine whether CBT could reduce psychological distress among diabetes patients and improve treatment outcomes.
The controlled study involved 200 adult participants with Type II diabetes mellitus. One hundred participants received the CBT intervention while another 100 formed the control group. Participants in the intervention arm attended eight counselling sessions over four months, with each session lasting between one and one-and-a-half hours.
The therapy covered several modules, including psychoeducation on diabetes, cognitive restructuring, medication adherence, problem-solving, coping strategies, physical exercise, relaxation techniques and strategies for maintaining treatment.
According to Professor Baguma, the findings showed that psychotherapy significantly improved participants’ wellbeing.
“The group that received the intervention experienced reduced stress levels and lower blood sugar levels compared to those who did not receive the therapy. We conclude that CBT is effective and should be adopted as part of diabetes care,” he said.
The study also yielded another important discovery.
“We have discovered that CBT as practised in the Western world is somewhat narrow. Their manual contains only eight elements. In Africa, we found that three additional components are necessary: effective communication between patients and health workers, goal setting, and instilling hope among patients. We call this African CBT,” Professor Baguma explained.
He added that the findings had also revealed the need to incorporate psychosocial care into the management of chronic illnesses and to train healthcare workers to address the psychological dimensions of disease.
Professor Andrew Marcel Otim, one of the co-investigators and founder of the Uganda Diabetes Association, said the study had brought to the fore an aspect of diabetes care that has long been neglected.
“There have been many efforts to address the physiological effects of diabetes, but we have largely ignored the psychological part of the disease. Yet the psychological aspect is huge,” he said.
He added that, diabetes management should go beyond medication but rather intergrate other components of care.
“Education, nutrition, exercise and self-monitoring are extremely important. Even simply knowing what to do is a very powerful intervention. Psychological distress and depression can increase blood sugar levels, so we need to help patients remain calm and hopeful,” he said.
Drawing from his experience as a clinician and educator, Professor Otim encouraged people living with diabetes to embrace physical activity.
“I tell my students and my patients to put on some music, dance, sweat and enjoy themselves. Nutrition, education and exercise remain central to managing diabetes.”
Dr. Wilber Karugahe, a counselling psychologist at Makerere University‘s School of Psychology and one of the co-investigators, said the findings demonstrate the need to integrate psychological care into the management of chronic diseases.
“A lot of studies focus on physical illness and not the psychological conditions that accompany these illnesses. This study confirms that diabetes has a significant psychological aspect and that patients need psychological interventions as part of their care,” he said.
Explaining the essence of Cognitive Behavioural Therapy, Dr. Karugahe noted that the approach helps people restructure their thoughts and behaviours.
“Imagine putting a sticker on your fridge that reminds you that some foods are not good for you and that healthier options are better. That is CBT. It helps people change the way they think and behave, and it can be used to address many behavioural challenges.”
The dissemination workshop was also attended by officials from the Ministry of Health, including Mrs. Christine Ninsiima Ahimbisibwe, Senior Programme Officer for Mental Health and Substance Abuse Control, and Mrs. Patience Butesi from the Department of Mental Health and Drug and Substance Abuse.
Mrs. Ahimbisibwe welcomed the findings and emphasised the need to integrate the study’s recommendations into Uganda’s clinical guidelines to enable healthcare workers to provide psychosocial support to patients living with chronic illnesses such as diabetes.
The human impact of the intervention was perhaps best illustrated by testimonies from participants who underwent the psychosocial training.
Tebugulwa Josephine, a retired teacher and employee at Mulago National Referral Hospital, said the intervention restored hope in her life.
“When we first joined the programme, we thought we were moving dead people. But now we have hope. I have hope of reaching 90 years. We were taught how to exercise and take care of ourselves. Even our families no longer treat us as sick people because we can now walk and participate in daily activities.”
Another participant, Bunje Joice, described the intervention as life-changing.
“People had already given up on me and were waiting for me to die. I could hardly walk, but now I can walk long distances and my diabetes levels have improved. Physical exercise has become my first medicine.”
Kyomuhendo Kate said the programme helped her manage stress and improve her health.
“I was so stressed and my legs were swelling, but after attending the treatment sessions, I am now much better.”
Sebuliba Bernard said the training transformed how he manages his condition.
“They taught us how to exercise, how to live and how to eat. If we follow what we were taught, we can change our lives.”
Based on the findings, the researchers recommended scaling up the intervention to district, regional and national referral hospitals, integrating psychosocial interventions into the training of health workers, and undertaking policy reforms to strengthen mental health support for people living with chronic illnesses.
The study was funded by the Makerere University Research and Innovations Fund (Mak-RIF) and brought together researchers from psychology and medicine, including co-investigators: Dr. Fredrick Nakwagala, Dr. Wilber Karugahe and Dr. Anne Ampaire.
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