For fifteen years, Alvera Mukarugwiza from Gahengeri Sector, Rwamagana District, lived in constant fear of the next time her sister would lose consciousness due to epileptic seizures. She remembers the worry of holding her head and arms and legs during the seizures, hoping to prevent a permanent injury.
"We sought help everywhere—we even wondered if someone had hexed her—but nothing worked,” Mukarugwiza recalled.
But she was optimistic on Monday, February 9, as her 39-year-old sister became the first patient to get Rwanda's first surgery on an epilepsy patient performed at the University Teaching Hospital of Kigali (CHUK).
This is part of an epilepsy surgery training camp organized on International Day of Epilepsy. The week-long intensive mission brought together foreign and local neurosurgeons and anesthesiologists to perform complex brain surgeries on eight patients whose conditions have failed to respond to medication.
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It marks the first time such specialized procedures have been performed in Rwanda and in the Great Lakes Region.
How epilepsy surgery works
According to medical experts at the site, epilepsy is essentially a "short circuit” in the brain, contrary to some beliefs that it is a hex or curse. It occurs when brain cells—much like an electrical circuit—fail to communicate correctly, leading to seizures that can range from brief lapses in attention to severe physical seizures.
In some patients it involves sudden falling, foaming at the mouth, while others may simply blank out mid-conversation or feel a burning sensation in the stomach, among other symptoms.
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Dr Sylvie Inyange Musoni, a neurosurgeon at CHUK, said epilepsy surgery helps patients with intractable seizures.
"We have many patients whose seizures remain uncontrolled despite being on multiple drugs,” Dr Musoni said.
She noted that the 39-year-old woman operated on Monday had suffered for 15 years despite taking three different medications.
"We are performing a left temporal lobe. By removing the specific area of brain tissue where the abnormal electrical activity originates, we expect to significantly reduce her seizure frequency.”
She added that this surgery offers an 85 per cent chance of a full recovery.
Dr Séverién Muneza, a brain and spine surgeon, noted that some patients pay up to Rwf3,000 per pill for medications that still do not stop the seizures.
"In the past, those who could afford it went to India for surgical procedures; those who could not simply had to endure the condition,” Dr. Muneza explained.
He added that having the surgery available locally removes a massive socio-economic burden.
"If we can identify a specific "misfiring” circuit in the brain, we can intervene surgically and offer these patients a permanent solution right here at home.”
Myths around epilepsy
Dr. Musoni discredited certain myths about the cause of epilepsy.
"Epilepsy is not caused by evil spirits, and it certainly is not contagious,” the surgeon explained.
He said it can stem from high fevers in childhood, bacterial infections, or tumors.
Diagnosing the condition correctly is the first step toward the operating table.
Dr. Muneza suggested that families can play a vital role in this process.
"My best advice to families is this: if you see someone having an episode, try to record a video of it on your phone,” he said,l. "That footage helps doctors distinguish between real epilepsy and other conditions like fainting.”
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For Mukarugwiza, the presence of the surgical treatment means a lot to patients and families who have endured years of stigma and financial hardship.
"What the country is doing is a miracle,” she said, "Epilepsy is a heavy burden—the seizures, the social stigma, the exhaustion—but we finally feel like there is light at the end of the tunnel.”