Kajiado: In the heart of Kajiado County, a silent struggle persists for people living with epilepsy. Despite advancements in the world of medicine, deep-rooted misconceptions and societal stigma continue to cast a shadow over their lives, often leading to discrimination and social exclusion.
According to Kenya News Agency, epilepsy, a neurological disorder characterized by recurrent seizures, affects millions of people worldwide. In Kajiado County, however, people living with the condition face unique challenges. Many people in the community still hold the traditional beliefs that epilepsy is caused by curses or witchcraft. These beliefs contribute to widespread fear and misunderstanding, exacerbating the challenges faced by those affected.
People suffering from epilepsy are often ostracized by the community, with epileptic children being hidden at home by their parents for fear of public ridicule. Josephine Koyiet, a resident of Kimalat, Kajiado East and a mother of four, says her life has been very difficult for her and her family ever since her third-born son, who is now 13, was diagnosed with epilepsy when he was only three years old. Koyiet said her son was out playing with other children when he had his first seizure.
‘My son was playing with other children outside when he had his first seizure. The other children ran away from him and started screaming. I too was confused and scared, and I started screaming as I had never witnessed one having a seizure before,’ she said. She said it was her neighbour who heard the commotion and rushed to her compound and helped place her son in a safe position until his seizure stopped. Koyiet then rushed her son to a nearby medical centre, where he was diagnosed with epilepsy and put on drugs to help manage the condition. It is from the hospital where she learnt more about the condition and how to help her son manage it.
However, she revealed that she has continued to face discrimination over the years from society, with some people telling her that she was cursed for giving birth to a baby with epilepsy. ‘Many people think epilepsy is as a result of curses or witchcraft. Some people even told me to take my son far away and abandon him as he was cursed. People are still very ignorant and do not understand this condition.’ She said. Koyiet added that her son has also faced discrimination from other children, especially in school, who do not understand his condition; thus, he often keeps to himself. She added that some parents warn their children to keep away from her son for fear of being infected with epilepsy, as they do not know that the condition is not infectious.
Moses Kinyanjui says he lost his job when his employer discovered that he is epileptic. ‘I was working as a waiter at a restaurant in Kitengela town when I had a seizure. I had not informed my boss that I had epilepsy, and so he fired me the next day, saying that I was a danger to myself and to others.’ He said. Kinyanjui added that many people with epilepsy find it hard to get employment as people lack awareness about epilepsy and how to help a person when they have a seizure. He called for awareness campaigns to demystify the myths and misconceptions surrounding epilepsy so as to ensure that people with epilepsy are not discriminated against.
‘Most of the stigma and discrimination is as a result of ignorance; many people do not understand what epilepsy is and how to handle a person with epilepsy. The only way to reduce the stigma is to educate the public.’ Kinyanjui said. Edward Ole Muya, Kisaju Location Chief, reiterated that children with epilepsy in the community are normally hidden as they are believed to be cursed or a bad omen. Ole Muya, who spoke during an awareness event to mark International Epilepsy Day, noted that epilepsy was a neurological disorder and not a result of witchcraft or curses.
‘Epilepsy is still viewed as a curse by many in our community. Some even associate it with evil spirits or witchcraft due to the fits and seizures. The stigma surrounding the condition has become so entrenched that people with epilepsy often keep their diagnosis hidden, further isolating themselves,’ said the chief. He called on the community to embrace people living with epilepsy and show them love so as to enable them to live their life to the fullest. Anastacia Kavemba, the founder of the Shine Epilepsy Support Organisation, emphasized the need to create awareness about the condition as a means to end the stigma.
‘Sensitising people about epilepsy is the key to changing perceptions. Through education and providing accurate information about epilepsy, we hope to dispel myths and reduce the stigma.’ She said. Kavemba noted that epilepsy is a treatable condition, and one can lead a normal life if they seek help. Epilepsy is a non-communicable neurological disorder that causes recurrent seizures due to abnormal brain activity. The condition is characterized by recurrent seizures, which are sometimes accompanied by loss of consciousness and poor control of bowel and bladder functions.
Some of the causes of epilepsy include brain injury, stroke, genetic factors, brain infections such as meningitis, and birth complications, among others. Epilepsy is the fourth most common neurological disease, with statistics showing that 1 in 26 people worldwide will develop epilepsy in their lifetime. According to the World Health Organisation, over 50 million people worldwide are affected by epilepsy. In Kenya, data from the National Epilepsy Coordination Committee (NECC) show that two in every one hundred Kenyans have epilepsy, with the prevalence being higher in rural areas than in urban areas, primarily due to risk factors such as untreated brain infections.
The International Epilepsy Day, celebrated each year on the 2nd Monday of February, is an opportunity to raise awareness about epilepsy and unite individuals, communities and organisations to support those affected by epilepsy. This year’s theme, ‘My Epilepsy Journey’ encourages individuals to share their personal experiences with epilepsy. By sharing their stories, the initiative aims to raise awareness and foster a deeper understanding of the challenges faced by those living with epilepsy, thus ensuring they receive the best possible care and support, enhancing their quality of life.