Epilepsy is on the rise in Sierra Leone, with cases surging to 87,000 (over 1% of the population), largely due to the cut-off of vital medication supplies from the UK-based charity, Medical Assistance Sierra Leone (MASL).

Max Bangura, Founder and Executive Director of the Epilepsy Association of Sierra Leone, shared these alarming figures during an exclusive briefing with Awoko on Tuesday, highlighting the dire situation epilepsy patients now face.

Bangura explained that for the past three months, patients have struggled to access the control drugs that help manage their seizures. This shortage began after MASL, which had been providing these medications, ceased its support, expecting the Sierra Leonean government to take over the responsibility through the Ministry of Health and Sanitation.

The decision to cut off aid has severely affected epilepsy treatment, with no readily available alternatives in sight. According to Bangura, this situation has worsened the condition of patients across the country. “The health system in Sierra Leone is still struggling to prioritize conditions like epilepsy, despite the government’s commitment to curative medicine in the 2002 Health Policy Paper,” he said.

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The partnership between MASL and the Epilepsy Association of Sierra Leone, initiated by Dr. Radcliffe Lisk, a consultant neurologist at Basildon and Thurrock NHS University Hospital in England, helped establish the country’s first structured epilepsy service. Despite these efforts, the sudden halt in drug supplies has left thousands without proper treatment.

While there are no national studies on epilepsy prevalence in Sierra Leone, local reports suggest that rates have risen significantly, from an estimated 60,000 patients to over 87,000 due to the ongoing shortage of control drugs, particularly at Connaught Hospital in Freetown.

Bangura further noted the pervasive cultural stigma surrounding epilepsy in Sierra Leone, where over half of the population associates the condition with witchcraft or demonic possession. Many patients turn to traditional or faith healing instead of seeking medical help, complicating efforts to provide effective treatment. In different regions, epilepsy is referred to by various names—’Fix’ among the Creoles, ‘Katuk’ by the Temne, and ‘Kpogboni’ by the Mende.

Recent statistics show that 48% of school-age children with epilepsy have had to abandon their education due to the severity of their seizures. Bangura shared a recent incident in which an epilepsy patient fell into an open fire during a seizure while cooking, resulting in severe burns. Such incidents highlight the life-threatening nature of untreated epilepsy.

“People with epilepsy should be fully investigated to find the cause of their seizures,” Bangura emphasized, adding that over 3,500 health workers were trained in 2024 through a government initiative to improve care for epilepsy patients across Sierra Leone’s districts. Despite the challenges, around 80% of those receiving treatment have shown signs of recovery, as they have adhered to their prescribed medication regimens.

However, accessing these life-saving drugs remains a challenge. The medications, including Phenobarbitone, Phenytoin (Epanutin), Carbamazepine (Tegretol), and Sodium Valproate (Epilim), are not sold over the counter and require a special import permit from the Sierra Leonean government. These drugs are sourced from countries like Germany and the UK, but bureaucratic hurdles have delayed the importation process.

Bangura explained that there are 20 types of epilepsy worldwide, each requiring specific treatment. For instance, 75% of epilepsy patients in Sierra Leone are treated with Phenobarbitone, a drug that has been in use for over 100 years and remains effective in developing countries. He also noted that a newer form of epilepsy, Absence Seizures, has recently been identified in Sierra Leone, primarily affecting children. Other common types in the country include Partial Epilepsy, Complex Partial Epilepsy, Myoclonic Atonic Seizures, Status Epilepticus, and Migraine-related seizures.

As the situation continues to unfold, epilepsy patients in Sierra Leone face an uncertain future. Without a stable supply of control drugs, the number of affected individuals is expected to rise, putting more lives at risk. Bangura is calling on the government to prioritize epilepsy treatment and ensure that necessary medications are available to those in need, before the crisis worsens.