Epilepsy is one of the most common neurological conditions in the world, yet it remains widely misunderstood and heavily stigmatized, especially in low- and middle-income countries.
Across East Africa, including Rwanda and the wider region, thousands of people live with epilepsy while facing fear, exclusion, and misinformation that often prove more damaging than the seizures themselves.
Although medical science has long explained the condition, harmful beliefs continue to shape how families and communities respond.In many communities, epilepsy is still linked to witchcraft, curses, or spiritual punishment.
These misconceptions discourage people from seeking medical care, even when effective treatment is available. As a result, children drop out of school, adults lose livelihoods, and families hide affected relatives to avoid social judgment.
Health professionals warn that such delays in care increase the risk of injury, disability, and even death.
“Epilepsy is a medical condition of the brain, not a spiritual problem. When people avoid hospitals because of fear or stigma, they deny patients the chance to live healthy and productive lives,” says Dr Jenipher Niyonziza, a medical practitioner at Kibuye Hospital in Karongi district.
Globally, more than 50 million people live with epilepsy, with nearly 80 percent found in resource-limited settings.
The higher burden in these regions is closely tied to preventable causes such as infections, head injuries, and complications during childbirth, combined with limited access to diagnosis and long-term treatment.
Understanding epilepsy
A person is diagnosed with epilepsy when they experience two or more unprovoked seizures, or when medical assessment shows a high likelihood of future seizures. Seizures occur due to sudden abnormal electrical activity in the brain. They are not contagious and cannot be spread through touch, food, or social contact.
In the region, common causes include severe malaria, meningitis, neurocysticercosis linked to pork tapeworm infection, road traffic accidents, birth complications, stroke, and head injuries.
In some cases, genetic, immune, or metabolic factors contribute, while for others the cause may never be clearly identified.
Public understanding of seizures is often limited to dramatic convulsions involving falling and shaking. However, epilepsy presents in many forms. Some seizures cause brief staring spells, confusion, unusual sensations, or sudden changes in behavior.
“These subtle seizures are frequently missed, especially in children. Without recognition, families may delay seeking care,” Niyonziza explains.
Treatment and first aid
Epilepsy is highly treatable. With correct medication, regular follow-up, and adherence to treatment, up to 70 percent of people with epilepsy can become seizure-free. Many can attend school, work, marry, and contribute fully to their communities.
Despite this, access to treatment remains uneven, and some patients stop taking medication once seizures reduce. This often leads to relapse and more severe episodes.
“Treatment works best when it is consistent. Stopping medication without medical advice can reverse months or years of progress. Knowing basic seizure first aid is also critical,” says Niyonziza.
During a seizure, bystanders should remain calm, stay with the person, and remove nearby objects that could cause injury. The seizure should be timed, and emergency care sought if it lasts longer than five minutes.
Nothing should be placed in the person’s mouth, as this can cause choking. Once the seizure stops, turning the person onto their side helps maintain clear breathing.
These simple actions can prevent serious harm. They are based on medical evidence, not fear, according to experts.
Ending stigma
While seizures can often be controlled with medication, stigma remains the greatest challenge for people living with epilepsy. Many face discrimination in education, employment, and marriage. Some families hide affected children, reinforcing isolation and shame.
Epilepsy does not define a person’s intelligence, character, or potential. Stigma hurts more than epilepsy itself. When communities understand the condition, they become partners in care rather than barriers,” Niyonziza observes.
Ending stigma requires open discussion, accurate information, and collective responsibility. Communities, schools, health workers, and leaders all have a role to play in encouraging early medical care and treating people with epilepsy with dignity and respect.
With awareness, access to healthcare, and compassion, epilepsy can be managed effectively, ensuring that no one is left behind or made to suffer in silence.
