Elizabeth Wambui Mwaniki
It was dinnertime at my boarding school. The dining hall was abuzz as girls engaged in random conversations over their meals. Suddenly, a shriek, commotion and then great panic filled the air. Something had happened to a student who lay on the floor, kicking spasmodically until they eventually subsided, leaving her unconscious. I was shaken. It was my first time seeing anything like it. For this girl, it was neither the first nor the last time she would experience these episodes. The scars on her face and hands told of several occasions when epileptic attacks had occurred.
Arising from a neurological disorder in the brain, epilepsy is a non-communicable disease characterized by recurrent seizures, unconsciousness and loss of bowel and bladder control while in the moment. WHO indicates that five million people are diagnosed annually with epilepsy. The majority of these people live in low-and-middle-income countries. The greatest burden of epilepsy occurs in sub-Saharan Africa SSA where it is more prevalent and deaths resulting from it more common than in other regions.
Owing to how it manifests, misinformation, fear and social stigma accompany people living with epilepsy (PWE). The mental and physical aspects of living with epilepsy cause limitations on the quality of life. The fear of having seizures in public and facing stigma can cause restrictions on social interactions, leading to social isolation and overall mental distress. While the need for sleep is of high priority for PWE, this too, can interfere with normal work and social life patterns. People living with epilepsy often experience other co-occurring mental disorders such as depression and anxiety, and in children, attention deficit hyperactivity disorder (ADHD).
Fast forward to several years later and a colleague shared with me her experiences with her daughter. Norah recalled the terrifying moment when she watched her 10-year-old daughter convulse for the first time. While in a public setting, she was at a loss at what to do and could not respond to curious on-lookers about her daughter’s seizures. It would become very taxing and confusing when family members recommended all manner of solutions including prayers, exorcism, traditional rituals and home remedies to alleviate her daughter’s illness. The family had to put in place practical measures to ensure the little girl’s safety. Norah withdrew her daughter from activities such as swimming and helping in the kitchen. She avoided public transport, lifts and crowded spaces when accompanied by her daughter. Someone had to watch over her constantly, even in school when she took a bathroom break. Her daughter endured stares and murmurs every time she had a convulsion in school. The frequent medical appointments interrupted her daughter’s learning, subsequently negatively affecting her academic performance.
Even though researchers now know that the prevalence of epilepsy is higher in SSA, the condition remains shrouded in a lot of secrecy and stigma. Many people lack access to treatment for many reasons, but primarily from a scarcity of trained medical personnel who can diagnose and treat epilepsy. Cultural beliefs associated with the disease also affect care-seeking and adherence to treatment. However, people with epilepsy can lead normal lives when provided with proper medical treatment.
Research carried out in Kenya has linked the risk for epilepsy with many factors including parasitic infections like Malaria, as well as with neonate complications and abnormal antenatal situations. The African Population and Health Research Center (APHRC) in collaboration with University of Oxford and other African institutions, through the Epilepsy Pathway Innovation in Africa (EPInA) study, is carrying out research to estimate the prevalence of epilepsy in informal settlements in Nairobi. This study also explores how sociocultural beliefs and stigma in urban–poor communities influence care-seeking, diagnosis, and treatment for epilepsy. Set within APHRC’s Nairobi Urban Health Demographic Surveillance System (NUHDSS), the study will screen the entire population in this catchment. Through this study, researchers will also show how digital technology in the form of an epilepsy diagnostic companion (EDC) can be used to reliably diagnose epilepsy at the primary healthcare level. The study will also establish knowledge pathways that can counter sociocultural beliefs and the stigma associated with epilepsy.
This study aptly addresses the predicament Norah and possibly many others find themselves in, as captured in Norah’s sentiments:
“How l wish l had met a neurologist sooner and listened less to family and society.”