Pick any 10 persons anywhere in Africa and ask them what they think is the cause of epilepsy (commonly known as "fainting fit" in Cameroon) is and you will get answers like witchcraft, bewitchment, poisoning, the possession by an evil spirit, or curses.
In much of Africa, epilepsy, a chronic disorder of the brain characterized by repeated seizures, is still erroneously attributed to witchcraft, demonic possession or curses. Consequently, people living with epilepsy are often victims of high level of stigma, neglect and discrimination with many being abandoned or rejected by their families.
Epilepsy reportedly affects about 50 million people worldwide with the majority (75-85%) of persons affected are found in developing countries including Africa. It is a condition that affects all people irrespective of age, sex, race, socioeconomic status etc. The causes of epilepsy are many and include infections of the brain like meningitis, traumatic brain injury (injury to the brain caused by trauma such as road accidents, falls), brain tumors and stroke.
The burden caused by epilepsy on those affected and their guardians or caregivers is significant especially in under-served and underdeveloped parts of the world. Many persons with epilepsy in these areas are often forced to drop out of school at an early stage due to epilepsy related factors such as the occurrence of seizures in the school milieu and progressive decline of intellectual capacity due to brain damage induced by repeated uncontrollable seizures.
However, one of the most serious negative consequences of epilepsy that has been well described and documented is social stigma against people with epilepsy. In fact, the prevalence of social stigma against people with epilepsy is higher than that of the condition itself especially in Sub-Saharan Africa where epilepsy is often attributed to witchcraft and curses.
Social stigma against people with epilepsy (PWE) which can be defined as social disapproval of PWE based on the epilepsy that they have which most people consider as a mark of disgrace, dishonour, witchcraft or curse, is the most studied implication of Epilepsy in Sub-Saharan Africa. Social stigma against PWE especially women is a major cause for concern in Sub-Saharan Africa. PWE are often disdained and avoided while others are jeered at particularly in public places.
The seizures or convulsions which characterize epilepsy affect the brains of PWE, but social stigma against PWE does not only affect the brain (psychology) of PWE but also their heart, (feelings) and consequently shapes their behaviors. PWE who are stigmatized usually feel different, devalued, lonely, depressed and rejected by society.
All these factors severely affect the social identity of PWE leading to low self-esteem and suicide which are very common among PWE. Stories have been told of how people with epilepsy have been carried to bushes or forests and abandoned there on the basis that they were witches or wizards.
Though social stigma against PWE affects both males and females with epilepsy, it is particularly pronounced against women with epilepsy (WWE). Women with epilepsy are not considered as candidates for marriage by many people especially in Sub-Saharan Africa. Many people will openly object to marrying a PWE or allowing their loved ones to be emotionally involved with any PWE.
Though WWE are deemed “not fit” for marriage by many men, they are often deemed “fit” for sex by some of these men. This is typically exemplified by the fact that many WWE are single parents stemming from the fact that they had been sexually exploited by men who later denied they were responsible for the pregnancy.
PART II tomorrow.
Dr. Mundih Noelar Njohjam
CEO Epilepsy Aid and Awareness Fdtn Purple day Ambassador Member of Young African leaders initiative network(YALI)