Kenyan Fredrick Beuchi’s younger sister Mercy had her first seizures in 2010 at the age of 2. Though the family understood that Mercy’s epilepsy was a medical condition, they didn’t know what to do next.
In Kenya, as in much of Africa, epilepsy is seen as having a spiritual cause (a curse, witchcraft, or possession). Others blamed the family for Mercy’s epilepsy, with some claiming they had “traded” demonic possession for wealth. The family’s church believed Mercy was possessed and told family members to pray about it. But as Mercy’s seizures continued, the church’s position changed.
“The church sort of recoiled away from us and the narrative went around that the problem was within our family,” Beuchi said in a newspaper interview in 2018. “That was a painful experience. It is part of the reason I felt that I needed to do epilepsy awareness campaigns.”
One day, one diagnosis
In 2012, Beuchi quit his job to help his mother care for Mercy, who was having seizures every 20 minutes and had suffered multiple injuries, including severe burns.
Months later, Beuchi saw an ad on television for Epilepsy Open Day, sponsored by Kenya’s National Epilepsy Coordination Committee. He traveled to Nairobi from Mombasa to attend the event, where he connected with an epileptologist. Two weeks later, Mercy was diagnosed with epilepsy and put on anti-seizure medication, which reduced her seizures from dozens per day to one or two. As she grew older, Mercy’s seizures lessened further; now 14, she has had long periods of seizure freedom and can attend school.
Inspired by what he had learned at Epilepsy Open Day, Beuchi and other epilepsy caregivers started their own organization: Foundation for People with Epilepsy, which is now a provisional chapter of the International Bureau for Epilepsy (link to ibe-epilepsy.org) (IBE). He has given talks in schools, churches, and communities and appeared on TV and radio shows to raise awareness about epilepsy as a medical condition and the need for proper treatment.
One mile at a time
In 2018, Beuchi took his message of epilepsy awareness on the road, literally, walking for 12 days from Nairobi to Mombasa (480 km/298 mi) and stopping in towns along the way to give talks to communities about epilepsy.
In 2020 he formulated a new challenge: to cycle from Nairobi to Arusha, Tanzania (about 270 km/168 mi), and then climb Mt. Kilimanjaro, the highest peak in all of Africa. Beuchi and his team sweated through gym workouts, preparatory hikes, and a 100-km cycling trial to prepare for the challenge, and he worked to find sponsorship and arrange for the border crossing. A media tour of local television and radio programs helped to heighten awareness of the project.
On November 17, the team took to their bicycles, crossing the border the next day and arriving in Arusha November 20. After a day’s rest, they began the long hike to the top of Kilimanjaro. On November 26, they reached the summit and planted a flag carrying the message that Beuchi is passionate about spreading: Epilepsy is manageable.
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.