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Study Reveals Epilepsy Prevalence & Treatment Barriers in Uganda, Urgent Need for Awareness & Resources

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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. 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.
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.
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. 
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.
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.

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The silent teachers: why body donation matters

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Assoc. Prof. Erisa Sabakaki Mwaka, Consultant Orthopaedic Surgeon and Chair, Department of Anatomy, College of Health Sciences (CHS). Makerere University, Kampala Uganda, East Africa.

By Assoc. Prof. Erisa Mwaka and Joyce Nabukalu-Kiwanuka

In every hospital, there is a moment when knowledge becomes a matter of life and death. A doctor must know where to place an incision, how to avoid damaging major organs, how to identify a nerve, how to deliver a baby safely, how to interpret a scan, or how to explain disease to a worried family. That knowledge does not begin in the operating theatre, it begins much earlier, in the anatomy laboratory.

For generations, the study of the human body has been the foundation of medical education. The regular use of human bodies for medical training purposes began in the late Middle Ages and spread during the 18th and 19th centuries. Initially, anatomists depended on gallows, poor houses, mental asylums, or jails as sources of bodies. However, the 1960s and 1970s saw the emergence of wilful body donation. Before students become doctors, surgeons, dentists, nurses, physiotherapists, radiographers, and other health professionals, they must first understand the human body in its real form. They must learn not only from books and diagrams, but from the body itself. This is why cadavers, though silent, remain the most important teachers in medical education. In simple terms, a cadaver is a dead human body used by health professions students to study anatomy; and Anatomy is the study of the physical structure and organization of the human body, both at macroscopic and microscopic levels.

As the Department of Anatomy at Makerere University College of Health Sciences  prepares to commemorate the “silent teachers” whose bodies are used for medical education on June 11, 2026,  Uganda is invited to reflect on a subject that is rarely discussed in the public domain, willed body donation. Body donation simply means a person willfully donates their body for educational purposes after death, and consent to it in life. This is a sensitive topic, but it is also a deeply human one. It touches our beliefs, families, culture, understanding of death, and responsibility to future generations.This commemoration ceremony is not symbolic but, it is a public statement that the contribution of silent teachers is sacred, educational, and deeply appreciated.

To donate one’s body after death is not an ordinary decision; it is an altruistic act of extraordinary generosity. It is a final gift to society. It allows health professions students to learn and appreciate the human body before they treat living patients. Cadavers are therefore not “specimens”, they are silent teachers and partners in medical education who continue to serve humanity even after death. Learning anatomy using a cadaver helps students to understand and appreciate the complexity of the human body, appreciate its natural variations, and develop the confidence and competence needed to serve the public. Students are also taught laboratory etiquette that emphasises dignity, empathy, and utmost respect for the cadavers, which attributes they carry into the clinical years when they interface with hospital patients.

In Uganda, where the demand for health workers continues to grow, medical education must be strengthened at every level. Our country needs well-trained doctors and health professionals who can serve in hospitals, health centres, universities, research institutions, and communities. But good training requires good teaching resources. One of these resources are the silent teachers who never complain, but impart immeasurable knowledge to future health professionals. Modern technology has introduced many useful tools into medical education. Students can now learn from videos, computer applications, digital images, plastic models, three-dimensional models, and virtual platforms. These tools are important and should be embraced, however, they cannot completely replace learning from the real human body. A cadaver teaches what a diagram cannot fully show; the true position of organs, the texture of tissues, the relationship between structures, and the natural differences that exist from one person to another. More importantly, cadaver-based learning teaches respect. It reminds students that medicine is not simply a technical profession, it is a calling rooted in human dignity. The first lesson students learn in the anatomy laboratory is that the body before them belonged to a person who had a name, a family, a story, and a life. That lesson shapes how they later treat patients.

Currently, most, if not all universities in Uganda, and similar settings in Africa use unclaimed bodies for learning Anatomy. The use of cadavers in Uganda is governed by the Penal Code (Anatomy Rules) of 1957 that permits public hospitals to transfer bodies unclaimed for at least 14 days to a medical training institution like Makerere University. Unfortunately, these cadavers are used without the consent of the deceased because most of them are unknown and with no known relatives to claim them. Many opponents to the use of unclaimed bodies opine that the practice is unethical. There is a global push toward ethical use of cadavers in medical education, where a person consents and bequeathes his/her body for medical education when still alive. For this practice to be sustainable, there is a need for a well regulated body donation program. Unfortunately, the concept of willful body donation is still not well understood by many people, and neither has it been a topic of public debate. Further, there are lots of myths surrounding death and dying in Africa, including Uganda that have hindered the establishment of successful body donation programs. Willingness to donate bodies for medical education is however, influenced by several factors including cultural and religious beliefs, respect for the dead and the need to fulfil burial rites, fear for mutilation and disrespect, to mention a few. These concerns are real and should not be dismissed. But they should be addressed with accurate information, openness, and utmost respect.

It is important to understand that body donation does not mean that a person is forgotten. On the contrary, it creates a legacy. A body donor may teach hundreds of future health professionals, in that way, one person’s final act of generosity can touch and save countless lives.  This is kind of patriotism is largely unkown in Uganda and we do not speak about enough. We often talk about serving our country through leadership, business, farming, teaching, parenting, or community service. But there is also service beyond life. Body donation is one way of saying: “Even when I am gone, let me contribute to the health of my people.”

Currently, Uganda now has more than 15 universities training medical students and the demand for cadavers for learning anatomy is on the rise. Actually, the supply of cadavers cannot fulfil the demand, and medical educationists need to find alternative source of cadavers. Wilful body donation is the answer. 

Uganda needs a national conversation on body donation. There is a need for deliberative public engagement involving various stakeholder including the public, religious and cultural leaders, civic leaders, the media, educationists, health professionals, medical training institutions, etc. 

This commemoration ceremony will involve inter-denominational prayers for the silent teachers, and a reflection of their contribution to healthcare in Uganda. We hope this ceremony will provoke public debate on a subject that is hitherto considered a taboo by many. We talked about some of these issues last year, in the first ever such ceremony in Uganda, and have received several requests for more information on the procedure for donating one’s body for teaching purposes upon death. Like President Obama’s said, “yes we can”, an the dialogue starts from you and me. You are all invited for the commemoration ceremony at 9.00 am on June 11, 2026, at the Makerere University School of Public Health auditorium on main campus. 

To donate one’s body is to give a final lesson, a final service, and a lasting gift to the nation.

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Makerere Health Services Guidance on Ebola Virus Disease (EVD)

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How to protect yourself and your loved ones from Ebola. Ministry of Health, Kampala Uganda, East Africa.

The Democratic Republic of Congo (DRC) and Uganda recently reported an outbreak of Ebola Virus Disease (EVD), which is a serious and often deadly disease caused by a person being infected by the Ebola virus.

The virus spreads through direct contact with body fluids such as blood, saliva, faeces, vomit, urine, sweat or genital fluids from a person who is infected with EVD.

The symptoms of EVD usually develop after 8 – 10 days from contact with an infected person and may include fatigue, high fever, headache, sore throat, muscle and joint pains, vomiting and diarrhea and in severe cases, bleeding.

What should we do as the Makerere University community?

The Chief, Makerere Health Services, Prof. J.K. Byamugisha advises as follows:

  1. Avoid unnecessary contact such as shaking hands, hugging etc.
  2. Place alcohol disinfectants or hand washing equipment at all entry points within the University and ensure everyone is using them.
  3. Students should sit in single-person chairs while in class, avoiding contact with their neighbours.
  4. Do not sit too close to one another especially in frequently crowded places such as classrooms, library or any other waiting area.
  5. While at the University Hospital, wash hands a the gate, use alcohol disinfectant at the reception.
  6. All patients should have a maximum of one caretaker – others can check on them by calling.
  7. Avoid bringing luggage to the University Hospital.
  8. Target to do as instructed by the health worker.
  9. For further information and guidance on Ebola, please call Dr. Charles Basigara on Tel: 0702 966652 and Sr. Eunice Namubiru on Tel: 0779 950978 (Contact persons for the University Health Services)

Additionally, always look out for and ensure full compliance with Ministry of Health (MoH) Infection Prevention and Control measures such as the one below.

How to protect yourself and your loved ones from Ebola. Ministry of Health, Kampala Uganda, East Africa.
How to protect yourself and your loved ones from Ebola.

How to report suspected Ebola cases to Health Authorities. Ministry of Health, Kampala Uganda, East Africa.
How to report suspected Ebola cases to Health Authorities.

Please find attached detailed communications from Prof. Byamugisha and
the Permanent Secretary Ministry of Health.

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Call for Applications: Masters Support in Self-Management Intervention for Reducing Epilepsy Burden

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An aerial photo of the College of Health Sciences (CHS), Makerere University showing Left to Right: The Sir Albert Cook Memorial Library, School of Biomedical Sciences, Davies Lecture Theatre, School of Public Health, Mulago Specialised Women and Neonatal Hospital (MSWNH)-Background Left and Nakasero Hill-Background Right, Kampala Uganda, East Africa.

The Makerere University College of Health Sciences and Case Western Reserve University, partnering with Mbarara University of Science and Technology, are implementing a five-year project titled “Self-management Intervention for Reducing Epilepsy Burden Among Adult Ugandans with Epilepsy.”

The program is funded by the National Institute of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS). One aspect of the program is to provide advanced degree training to qualified candidates interested in pursuing clinical and research careers in Epilepsy. We aim to grow epilepsy research capacity, including self-management approaches, in SSA.

The Project is soliciting applications for Master’s Research thesis support focusing on epilepsy-related research at Makerere University and Mbarara University, cohort 3, 2026/2027.

Selection criteria

  • Should be a Master’s student of the following courses: MMED in Internal Medicine, Paediatrics, Surgery and Neurosurgery, Psychiatry, Family Medicine, Public Health, Master of Health Services Research, MSc. Clinical Epidemiology and Biostatistics, Nursing, or a Master’s in the Basic Sciences (Physiology, Anatomy, Biochemistry, or any other related field).
  • Should have completed at least one year of their Master’s training in the courses listed above.
  • Demonstrated interest in Epilepsy and Neurological diseases, care and prevention, and commitment to develop and maintain a productive career, and devoted to Epilepsy, Clinical Practice, and Prevention.

Research Programs:

The following are the broad Epilepsy research priority areas (THEMES), and applicants are encouraged to develop research concepts in the areas of: Applicants are not limited to these themes; they can propose other areas.

  • The epidemiology of Epilepsy and associated risk factors.
  • Determining the factors affecting the quality of life, risk factors, and outcomes (mortality, morbidity) for Epilepsy, epilepsy genetics, and preventive measures among adults.
  • Epilepsy in childhood and its associated factors, preventative measures etc.
  • Epilepsy epidemiology and other Epilepsy related topics.
  • Epilepsy interventions and rehabilitation

In addition to a formal master’s program, trainees will receive training in bio-ethics, Good Clinical Practice, behavioral sciences research, data and statistical analysis, and research management.

The review criteria for applicants will be as follows:

·      Relevance to program objectives

  • Quality of research and research project approach
  • Feasibility of study
  • Mentors and mentoring plan; in your mentoring plan, please include who the mentors are, what training they will provide, and how often they propose to meet with the candidate.
  • Ethics and human subjects’ protection.

Application Process

Applicants should submit an application letter accompanied by a detailed curriculum vitae, two recommendation letters from Professional referees or mentors, and a 2-page concept or an approved full proposal describing your project and addressing Self-Management Intervention for Reducing Epilepsy Burden Among Adults or an epilepsy-related problem.

For more information, inquiries, and additional advice on developing concepts, don’t hesitate to get in touch with the following:

Makerere University College of Health Sciences

Prof. Mark Kaddumukasa:  kaddumark@yahoo.co.uk

Mbarara University

Ms. Josephine N Najjuma: najjumajosephine@yahoo.co.uk

Only short-listed candidates will be contacted for Interviews.

A soft copy should be submitted to the Administrator of the Epilepsy Project. Email: smireb2@gmail.com; Closing date for the Receipt of applications is 5th July 2026.

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