'People with epilepsy deserve to be heard'

John Magati, a representative of U-Rise Kenya. [File, Standard] Tell us more about your organisation We serve people with epilepsy in Kisii County and neighbouring counties. Health is one of our key programmes. We help people, particularly with epilepsy, to reach their full potential. What are the challenges that people with epilepsy have based on your knowledge of the condition? Awareness is the biggest problem people with the condition experience. Some of them are not aware that epilepsy is a medically treatable condition. Many people prefer to seek culturally established responses to the disease by going to traditional medicine men or pastors. But when it comes to the use of modern medicines as a remedy, there is that knowledge gap. People don't know where to go, where to access the treatment and who to consult. There is also an issue of stigma in the community. Most people with epilepsy, especially young people are hidden in their homes. Families are ashamed of their members who have this condition. At times, even educated people hide their kids from the public. People with epilepsy go through a lot including high treatment costs. The current fluctuation of the dollar has made drugs even more expensive, especially for people surviving on below a dollar a day. Some people with the disease don't follow up on how their condition is progressing as they take medication. There is also a gap in research. Data about people with epilepsy is also insufficient and outdated. What do you think needs to be done to create further awareness around this condition? Making people know about this condition even down to the village level would help a lot. It would entail involving all stakeholders including county governments, religious leaders, chiefs and influential figures in the community. This is because epilepsy does not only affect the person with epilepsy, it affects everyone. If a household has five people and one child has epilepsy, it affects the siblings, parents and even the grandparents. When the child goes to school, it affects the teachers and classmates. It is a social problem and therefore needs a lot of awareness in the community. Could you expound on how culture has fuelled the stigmatisation around the condition? Cultures influence our beliefs which then affect treatment. Unfortunately, our culture at times pushes people away from scientifically backed treatment. In traditional times, the symptoms of epilepsy were often associated with witchcraft and evil spirits. There are people who still hold such beliefs in today's society. This has affected the treatment gap. It has also led to a lot of misinformation about the disease. Are there any challenges faced by people with epilepsy in the job market? Some employers do not give people with epilepsy opportunities due to stigma. The job market is competitive and many employers do not see the need to employ people with epilepsy when there are so many other applicants without the condition. Some people with epilepsy who are already working experience stigma in the workplace. What advice can you give to society on how to accommodate people with epilepsy? I believe that society should learn about the condition because information is the foundation to stop the stigma around the disease. There are even a few cases of violence. The more you know, the better you are at handling people with epilepsy when you come across them. Any final words? People with epilepsy deserve an opportunity to be heard and involved in building the economy of this country. It is therefore important to create awareness and end stigma around this condition.

'People with epilepsy deserve to be heard'

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