Fred Kiserem (pictured below) was working in a café in Iraq when he suddenly fell down and started jerking. When he woke up, a friend from Uganda told him that it looked like kifafa – epilepsy. This was Fred’s first seizure, and he thought that at 27 he was too young for epilepsy. To find out more, Fred returned home to Kenya. After another seizure that landed him in the hospital, he sent up a prayer to God that if he got out of the hospital, he would start an organization for people with epilepsy.
The Kiserem Epilepsy Foundation, started in 2016, is a community organization in Githurai just 40km northeast of Nairobi. It supports over 300 people with epilepsy and their caregivers, sharing information about causes of epilepsy, triggers of seizures, and first aid dos and don’ts. Fred, along with his wife, Kristin (who helps with project management), and Yvonne (who is the administrator and computer teacher) have also set up a vocational training program. This program gives practical skills like tailoring, carpentry, and computer skills to people with epilepsy, helping them to move ahead in life.
Fred is well-known as a resource for seizures and epilepsy in his neighborhood of Mwihoko. He has a way of talking about epilepsy that normalizes the condition and puts people at ease. People come to him to ask about where they can go for diagnosis, and to find out about treatment.
Sometimes Fred comes across people who believe the seizures are caused by demons and they want to hold prayer vigils to get rid of them. Fred tells them, “you can pray for healing, and then still go to the doctor.” In order to break down the stigma around epilepsy and seizures, the Foundation hosts awareness campaigns in local elementary schools and in churches. “If we talk about seizures regularly, people will know what is happening when they see a friend or family member start jerking.”
SIA Partners to Support Kiserem Epilepsy Foundation
Medication is effective in treating epilepsy but many people with epilepsy in Kenya are unable to get medical care or pay for the medications. This is where Spirit in Action comes into the picture! A SIA grant to Kiserem Epilepsy Foundation in December 2020 helped them establish a poultry project. This project is a vocational training program for 100 women with epilepsy and their caregivers. Each week, one person is selected to care for the chickens, learning how to feed them, keep them healthy, and clean the coop (saving the manure for gardens!).
It is also an income-generating project for the Foundation. The broiler chickens will mature after two months and they have already arranged to sell the meat to a hotel. The profits will help them distribute medicine to those who cannot afford it.
Fred and his team are a great example of how SIA partners are deeply rooted in community and passionate about serving those around them to create a better future. “Once you empower someone, they will go onto help another,” says Fred, embodying the SIA principle of the ripple of Sharing the Gift. They have a big vision of reaching more than ten thousand with epilepsy in the next ten years and we are proud to join them in this important work.
Women learning to sew dresses at the Kiserem Epilepsy Training Centre