Dr Emmanuel Wegoye (left), a Neurosurgeon and the Director CURE Uganda Medical Director, uses a microscope to perform a vertical hemispherectomy epilepsy surgery. PHOTO | PHOEBE MASONGOLE
Irene Nabalwa, 28, from Bunaganda Village in Namisindwa District in the Bugisu Sub-region, has lived with epilepsy since childhood. The condition has profoundly affected every aspect of her life.
"I never had the chance to go to school like other children because my seizures could happen at any time, and teachers were afraid I might get hurt," Ms Nabalwa said on Saturday during an interview with the Daily Monitor newspaper.
"I wanted to learn, and I had dreams, but epilepsy took that away from me."
The unpredictable nature of her condition has made it nearly impossible for her to hold a job or move freely without fear. Every day, she battles not only the seizures but also the deep loneliness that comes from being treated differently.
"People in my village avoid me. Some think I am cursed, while others are simply afraid to be around me," she said, with tears rolling down her face.
The shame and stigma have forced her to stay indoors most of the time, robbing her of a normal life.
"I feel trapped," she said. "I just want to be treated like a human being, not like an outcast."
Epilepsy is a chronic, non-communicable disease of the brain that affects people of all ages. According to the World Health Organization, around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases. Nearly 80 percent of those affected live in low- and middle-income countries.
Ms Nabalwa’s mother, Lucia Namono, feels the pain of watching her daughter suffer without much she can do.
"I feel helpless. I have tried everything: hospitals, herbal remedies, prayers, but nothing has cured her. Sometimes, I stay awake at night just watching her breathe, afraid that a seizure might take her away," she said.
Ms Namono struggles to provide the medication Nabalwa needs because it is both expensive and hard to access.
Epilepsy is a significant public health concern in Uganda, with prevalence rates varying by study and region.
Research
A study in Rukungiri District reported an age-specific prevalence of 2.04 cases per 1,000 children under 15 years. Another study from the Iganga/Mayuge Health and Demographic Surveillance Site found a higher prevalence rate of 10.3 per 1,000 individuals. National estimates suggest approximately 1.69 percent of the population, or about 80 per 10,000 individuals, are affected.
Due to a lack of awareness about neurological disabilities, many label those with epilepsy as "demonic," leading to social isolation.
Mr Husein Mugamba, the chairperson of Kilulu B Cell, Northern City Division, highlighted the dangers of misinformation.
"When someone has a seizure, it's believed that putting a spoon in their mouth will stop the seizure and prevent them from biting their tongue," he said.
Mr Brian Wekomba, a student at Nkoma Secondary School in Mbale City, said many of his peers believe epilepsy can be transmitted by touch, especially during a seizure.
"I also heard that epilepsy is contagious. If you touch someone having a seizure, you might get it too," he said.
Ms Mary Nelima, a mother of a child with epilepsy, said some attribute the condition to witchcraft or evil spirits.
"In my community, many believe taking my child to a traditional healer would cure him, as they think epilepsy is caused by supernatural forces," she said.
Mr Jolly Okello, a teacher at Namatala Primary School, noted that epilepsy is often mistaken for mental illness.
"Because of how seizures affect brain activity, people with epilepsy can sometimes be mistakenly perceived as mentally unstable or 'crazy'. This misconception contributes to stigma and discrimination," he said.
Pastor Michael Odukule from Living Streams Ministries International in Mbale City emphasised that epilepsy should not be seen as a curse or demonic possession.
"As Christians, we must show love and compassion to those suffering from epilepsy, just as Jesus did when He healed the sick. While prayer is important, we should also encourage medical treatment because God works through doctors as well," he said.
He urged communities to eliminate the stigma and support those affected.
"The Bible does not explicitly mention epilepsy but describes seizures in passages like Matthew 17:14-18 and Mark 9:14-29, where Jesus heals a boy suffering from them. Early translations sometimes associated such conditions with demonic possession, but today, epilepsy is understood as a neurological disorder. Many Christian scholars advocate seeking medical treatment alongside prayer," he said.
Stigma
Mr Joel Lukoye, a medic at Mbale Regional Referral Hospital, said epilepsy remains a major public health concern. Yet, many do not seek proper medical care due to alot of stigma and misinformation.
He explained that seizures vary in severity. While some patients respond well to medication, others require specialised care.
"One of the biggest challenges we face is the lack of access to anti-seizure drugs and neurological specialists, especially in government hospitals," he said.
Mr Lukoye emphasised the need for community education to dispel myths and encouraged early diagnosis and consistent treatment.
CURE Children’s Hospital of Uganda now performs life-saving surgeries for children under 18 with neurological conditions like epilepsy. The initiative is transforming lives and providing hope for families affected by these disorders. However, the hospital is still developing the programme, relying heavily on sponsorships and support from well-wishers to sustain and expand its services.
Victim speaks out
Wilson Opolot, a 14-year-old resident of Serere District, is an inspiring example of overcoming epilepsy after treatment at CURE hospital. Locals previously labelled him "demonic".
"People used to call me names and say I was cursed. It hurt me, but I knew it wasn’t true," Mr Opolot said.
His struggle with epilepsy began in early childhood when malaria triggered severe and frequent seizures at the age of three. As a result, his academic progress slowed down.
At CURE hospital, doctors introduced him to anti-seizure treatment and conducted tests that revealed developmental issues in a portion of his brain. Opolot later underwent surgery, which changed his life.
"I feel much better now," Wilson said with a smile. "I don’t fall like I used to. I believe I will be okay."
Dr Shadrack Khisa, a clinician at CURE Children’s Hospital, described epilepsy as a neurological disorder characterised by recurrent and unprovoked seizures caused by abnormal electrical activity in the brain.
"Seizures can range from brief lapses in awareness to intense convulsions. Common causes include brain injuries, infections, genetic factors, and sometimes, unknown origins. While not a mental illness, epilepsy can lead to social stigma and emotional stress," he said.
