Fatima Malumfashi’s life took a dramatic turn when, at just eight years old, she underwent her first exorcism in Sokoto State, northwestern Nigeria. Before then, she had experienced unsettling symptoms—hallucinations, episodes of lost awareness, intense emotional outbursts, and a strange twitching sensation in her brain.

Alarmed by these inexplicable signs, her family sought help from a cleric, locally known as a Mallam, who placed his hands on her head and recited verses from the Qur’an. Hours later, he asked, “Who and who are within you?” leaving Fatima bewildered.

“He spent hours commanding the djinns (demon) to come out and talk to him, but to no avail,” Fatima told HumAngle. “In the end, he concluded that the djinns within me were deaf and dumb. After him, many others came through with their unique explanations for why the djinns residing in me never responded to their calls.”

Even in medical settings, Fatima’s condition was misunderstood. As a child, doctors misdiagnosed her with malaria and typhoid and, in worse cases, suggested her symptoms might be the work of djinns or a spiritual affliction, advising her parents to seek alternative treatments.

It took years before she finally received the correct diagnosis: epilepsy.

What’s Epilepsy?

It is a chronic neurological disorder that causes recurrent seizures due to abnormal electrical activity in the brain. Seizures can affect awareness, muscle control, sensations, emotions, and behaviour. While no cure is confirmed, medication can often manage the condition.

For Fatima, the most terrifying part of her illness was not the seizures themselves but the chaotic experiences leading up to them. “I struggled with the belief that I was possessed by djinns due to the overwhelming sensations in my head. It was heartbreaking,” she said. “I still experience hallucinations, anxiety attacks, and lots more.”

Globally, over 50 million people live with epilepsy. Yet, nearly 90 per cent in developing countries have little to no access to proper healthcare due to widespread misconceptions and myths surrounding the condition. Efforts to address these challenges are often hindered by inadequate healthcare systems, cultural stigma, and deeply rooted beliefs about epilepsy’s causes and treatment.

Studies in Cameroon and Nigeria show that epilepsy is often regarded as a curse, sin, demonic possession, hereditary insanity, or even a contagious disease, making it harder for people to access treatment. An estimate of 65 per cent of people in communities where epilepsy is common also object to their children marrying people with this condition, and only less than 50 per cent would offer employment opportunities to those affected. 

‘Managing epilepsy comes at cost’

Now 24, Fatima has completed her Bachelor’s degree at Kaduna State University in North West Nigeria, where she is currently based. She is undergoing an internship at a non-governmental organisation. Reflecting on the difficulties she faced as a student, she recalled how her first year was fraught with challenges—struggling with concentration, forgetfulness, and frequent seizures. But over time, she learned more about her condition and how to manage it.

“I began to adjust my daily activities around my symptoms, learning the dos and don’ts, which helped me strike a balance between my epilepsy and my everyday life,” she told HumAngle. 

Managing epilepsy comes at a cost—literally. Fatima spends an average of ₦45,000 per month on medication, though recently, that amount has risen to ₦120,000. Fortunately, Fatima told HumAngle she can go up to six months without a seizure. Her last episode, in Oct. 2024, was triggered by the extreme pain she experienced during a tooth extraction.

Other patients who spoke with HumAngle also lamented the high cost of treatment.

“It’s an expensive way to have to live,” Gloria James* said. 

Although she needs to take her medication daily, financial constraints force Gloria to skip doses, often only taking them when she begins to experience symptoms, such as numbness in her legs. One of her prescribed drugs costs ₦75,000 for a 50-day dosage. Unable to afford it, she switched to an alternative that cost ₦30,000 per month. However, this has come with its struggles—side effects such as short-term memory loss and depression.

“There were times that I was suicidal, even though I feel better now.  I do hope that I would not require surgery in the future as my healthcare is already expensive, and I am not sure if I can afford it,” Gloria added. “The first time I was discharged from the hospital, I had to learn to walk again. It came with a lot of limitations.”

Barriers to treatment 

At school and work, people often grew frustrated with Fatima’s forgetfulness, unaware of her condition. Even though she loved attending social gatherings, those environments triggered her seizures as a teenager, forcing her to take a step back from doing things she loved. Fatima also struggled with the dismissal and lack of acceptance and understanding from the people around her. 

“I try to explain that I have epilepsy, and that it’s related to specific brain activity for which I’ve been on medication for years. Seventy per cent of the responses I receive are along the lines of “‘maybe you should try traditional medicine; it could be a djinn issue.’” 

Despite these challenges, Fatima is determined not to let epilepsy define her or hold her back from reaching her full potential. She is focused on pursuing her dreams in all aspects of life—building relationships, growing personally, and refusing to live in constant fear of the next seizure.

For Gloria, her diagnosis came more easily—she was fortunate to receive care at a good private hospital after her symptoms first appeared. But that did not make her journey any less harrowing. In 2018, without any noticeable warning signs, she fell into a coma for a week.

“My theory is that it all started after a tetanus injection I received as a child. Since then, I began experiencing minor issues in my leg,” she said. 

Her Magnetic Resonance Imaging (MRI) test results have not provided clear answers. There is still one more test she needs to take, but she has no access to the necessary facilities due to the location where she currently lives.

Chinelo Okonkwo, a general medical practitioner, said, “There are some special tests to take before making a proper diagnosis. To be able to identify the exact type of seizures and treatment method, you require tests like brain imaging, usually an MRI and others. The truth is there aren’t many places in Nigeria that have access to that. The expenses, lack of specialists, and inadequate equipment are huge barriers to treatment.”

A life long battle

Esther Ogwuche is working towards completing her second degree in History and International Relations at Veritas University, Abuja, North-central Nigeria. Previously, she graduated from the Department of Theatre Arts at the Federal University of Education in Zaria, Kaduna, in 2022.

Her first seizure occurred at a talent competition when she was 12. After performing on stage, she collapsed. For over a week, her family rushed her from one hospital to another, searching for answers. Many doctors struggled to diagnose her condition, treating her for high blood pressure and malaria instead. Only at another hospital in Kaduna did she finally receive the right diagnosis.

“A new doctor paid attention to how I behaved and suggested that we see a specialist because he suspected my condition had something to do with my brain,” Esther told HumAngle.

Following a referral to do an Electrocardiogram (ECG) at a neuropsychiatric hospital in Kaduna, her results showed a problem with her brain waves, which caused them to twitch and led to her epilepsy diagnosis. 

“Whenever I get upset, overexcited or shocked, I get triggered. There were times I could have up to 3 or 4 seizures in a day,” she told HumAngle. “Sometimes, I feel like my organs are shrinking, and my entire body feels very tight. Seizures are often misdiagnosed. They will give you different medications for different things, hoping one of them will work. A lot of people don’t know what it is. People will see you as irritating because spit can come out of your mouth, and your body shuts down. It feels like your system is rebooting.” 

‘Stigma and isolation’

Esther believes there is no empathy for people with seizure disorders. A particularly painful memory was a time when a close friend expressed her obvious disgust at her frequent attacks. She added that the condition affects her mental and physical health. It affects her ability to run or do anything remotely stressful, even if it’s something she wants to do. Her condition also triggers a lot of feelings of responsibility towards the people around her.

“In my current school, I had to explain to my roommates when I arrived, and they take care of me sometimes. When I start experiencing symptoms, I quickly rush to the clinic so I don’t have to stress the people around me,” she said.

Most of the accommodations she receives are from her family, making navigating the outside world difficult. Many people also blame those battling with epilepsy; hence, they constantly feel isolated and misunderstood. 

“I wish we had more inclusion in schools,” Esther said. “People have health challenges, and the best thing you can do is be kind to those with them. I hope that someday, there will be a cure for this condition; it is a very dangerous and unpredictable disease. It is so heartbreaking.”

Esther’s mother initially opposed her attending university, fearing for her safety. She was haunted by an incident where a man fell from a tricycle during a seizure, while bystanders merely watched. Knowing the same could happen to her daughter terrified her.

Living with epilepsy as a mother

Studies show that women with epilepsy are least likely to get married, and have a higher risk of separation and divorce due to stigma, therefore leading to negative impacts on their psychological well-being. They are also at a higher risk of experiencing sexual assault and suffering injuries from seizure episodes. Women with epilepsy also have a lower economic status than other women. 

For Fatima, one of the greatest challenges is the uncertainty surrounding motherhood.

“The medications I take for my condition make it harder for me to get pregnant since they act like contraceptives. Because of this, people sometimes see it as a negative part of who I am as a woman. There’s often pressure, especially in some cultures, that a woman’s worth is tied to her ability to have children, which can feel isolating and frustrating when it’s something I can’t control.”  

She is not alone in this experience. Studies indicate that 40 per cent of women with epilepsy experience increased seizures during pregnancy, while 16.2 per cent suffer miscarriages. Certain drugs, such as Lamotrigine, have also been linked to a higher risk of autism in children.

Gloria worries about how her medication might affect her ability to conceive in the future.

“They told me to come back when I am ready to have children so that they can change my drugs. This means I have to conceive or give birth under medical supervision,” she explained. “Sometimes, I avoid going into relationships because I know whoever I end up with may have to take financial responsibilities for my healthcare.” 

Dr Chinelo warns that many anti-epileptic drugs can cause congenital disabilities or infertility in women.

“Most people don’t realise when they get pregnant, and it automatically means that if they get pregnant, they can only hope that the medications they are on would not affect their babies in some way. And there aren’t many alternative options for them to take during pregnancy,” she explained. 

Although epilepsy is the most common childhood neurological disorder worldwide, studies show that 85 per cent of people with the condition live in developing countries, where the lack of social security and inadequate healthcare systems place an immense financial burden on patients.