Orphaned by circumstance: The struggles of epilepsy patients in Nigeria

Ahmad Shuaibu’s life has been defined by seizures since he was just a year old. As an infant, his legs would stiffen violently, foam would gather at his mouth, and he would collapse in silence, only to regain consciousness slowly.

His parents, who live in Wamba, Nasarawa State, sought help at the local primary health centre, but nurses prescribed medication without resolving the convulsions. Later visits to Wamba General Hospital failed to improve his condition.

The burden of care weighed heavily on Shuaibu’s family. Following the death of his father shortly after his 18th birthday, his mother became his sole caregiver.

She later learned that he was living with epilepsy, a neurological disorder characterised by involuntary movements, convulsions, and loss of consciousness. Tragically, she passed away last year, leaving Shuaibu an orphan now battling his condition largely alone.

Shuaibu’s stepmother, Ramatu Usman, recounted the family’s struggles with limited access to medication and costly herbal treatments.

“We paid a large amount of money all the time for his medication until he grew into adulthood,” she said. Despite these efforts, financial constraints and the chronic nature of his illness prevented Shuaibu from attending school or learning skills that could improve his independence.

Epilepsy is a serious neurological disorder affecting over 50 million people worldwide, according to the World Health Organization (WHO). In Nigeria, more than 1.2 million people live with the condition, many of whom rely on herbal remedies or go untreated due to the high cost of medical care.

Dr. Onwusobalu Somto, a senior medical expert at Wamba General Hospital, described epilepsy as a “dangerous neurological disorder” that causes sudden, involuntary movements, convulsions, and sometimes loss of bladder or bowel control.

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“Episodes can strike anytime—during sleep, work, or travel—posing constant danger to the patient,” he said. He explained that causes of epilepsy can include chemical imbalances in the brain, tumors, strokes, or brain damage from illness or injury.

While epilepsy can be managed with proper medical and surgical treatment, Dr. Somto highlighted the severe barriers faced by underprivileged patients in Nigeria.

Many primary healthcare centres lack specialists, and only two teaching hospitals—in Lagos and Ibadan—offer training for epileptologists. Surgical treatment for epilepsy is currently unavailable in the country, forcing patients to seek care abroad at prohibitive costs.

Shuaibu’s daily life illustrates these challenges. On a January afternoon in 2025, he suffered a convulsion while pushing a wheelbarrow filled with waste along a street in Wamba. He collapsed, rolling on the ground as passersby watched but did not intervene.

His stepmother, accustomed to his monthly episodes, boiled herbal remedies that remained the only affordable treatment option.

The disease has left Shuaibu physically scarred and socially isolated. His face bears multiple healed wounds, and he walks with a limp due to repeated falls. Attempts to earn money are often thwarted by seizures, leaving him dependent on caregivers.

Salihu Umar, another 28-year-old resident of Wamba living with epilepsy, shared a similar struggle. He has lost all his front teeth due to repeated falls and faces frequent theft when unconscious, despite the support of his aunt and guardian, Chindo Liman.

Experts warn that the plight of epilepsy patients in Nigeria reflects systemic failures in healthcare access and social support. They call on the government and NGOs to reduce treatment costs, ensure consistent medication supplies, expand specialist care, and educate communities on the disorder.

“The government knows what to do; most officials travel abroad for care,” Dr. Somto said. “They should take a page from other nations and create policies that protect and support patients who cannot afford treatment.”

Despite laws such as the Nigerian Disability Rights Act 2018 and the establishment of the National Commission for Persons with Disabilities, many epileptic patients continue to live in poverty, untreated and vulnerable.

Shuaibu’s story is a stark reminder of the urgent need for accessible healthcare, social support, and public awareness to protect and empower Nigerians living with epilepsy.