By Mercy Kachenge
Migori, Kenya: Geno Epilepsy Center for empowerment celebrates a milestone on the epilepsy journey with this year’s theme being advocacy and awareness through a soccer tournament that tends to bring fathers and their children for checkups that is based in Migori County.
Vallent Rachel Adhiambo,CEO, founder and Director of Geno Epilepsy Center for Empowerment started the organization to assist, educate, and empower others facing epilepsy which is often highly stigmatized, and people with the condition are frequently viewed negatively in the community. The organization aims to raise awareness, reduce stigma, and advocate for the rights of people with epilepsy.
According to Vallent Adhiambo, to mark the Geno center’s fourth anniversary together with her team organized a soccer tournament to raise awareness about epilepsy which specifically targets men and boys, who are often reluctant to seek medical help or acknowledge their condition due to the stigma.
She narrates that men, particularly fathers, tend to blame their wives when children are born with epilepsy, leaving women to bear the burden of care and since soccer is a popular sport among men, the tournament provided a platform to engage them and educate them about epilepsy.
Geno Epilepsy Center also offered a free medical camp providing various services such as epilepsy care, blood pressure monitoring, HIV testing, and physiotherapy.
Despite the organization’s positive impact, they also encounter several challenges since they started the initiative in 2020. This entails issues such as financial constraints since organization has not yet secured steady funding or donor support thus relying on contributions from friends, family, and donors from well-wishers.
“Another significant challenge is the tendency of some people with epilepsy skip attending the clinic after experiencing slight improvements this is as a result of the cost of anti-epileptic medications being expensive which results to as many people not being able to afford the daily costs that can amount even to 100 shillings or more per day. This financial strain often forces individuals to prioritize basic needs like food over medication”, she said.
Moreover, she stated that the ongoing stigmatization of people with epilepsy, particularly in rural areas men in particular, are often reluctant to acknowledge their condition, which can exacerbate stigma.
This is especially true when men find out that their wives have children with epilepsy, women are often left to shoulder the responsibility of caring for these children, which can lead to further discrimination thus the Geno Epilepsy Center Empowerment uses events like the soccer tournament to engage men, raise awareness, and provide education on how to support people with epilepsy.
Speaking during the celebration of their 4th anniversary, she added that stigma remains a major challenge, particularly in educational institutions and workplaces with herself losing her job due to her epilepsy condition that further motivated her to start the organization by raising awareness in schools and churches and later introducing a monthly epilepsy clinic.
The clinic, which is supported by a neurologist from Kisumu, has been running for the past four years and has made a significant impact in the community.
According to Vallent Adhiambo the monthly clinic which takes place every last Thursday of the month, serves people from all patients all over Kenya with patients coming from as far as Homabay County and Kiambu to receive treatment with only one specialist, a neurologist who oversees the clinic.
She added that while the statistics on epilepsy in the region are difficult to track, the clinic sees around 50 patients per month, with more people attending during outreach events. The number of people benefiting from the organization’s services continues to grow, especially as awareness spreads at community level.
Despite the positive outcomes, the organization continues to face financial challenges since her being the founder of the organization has been volunteering full-time with no salary thus relies on partners, well-wishers, and donors to fund the projects and clinics.
Financial support from partners including organizations like AJIRA, has allowed the organization to grow since it has provided ICT training for people with epilepsy having already two clients trained by AJIRA and employed earning a salary of 25,000 shillings per month.
Vallent underscored the need for other women, particularly those living with disabilities, disability is not inability and that despite facing challenges, individuals with disabilities can achieve great things.
“Young women with disabilities need to accept their condition, follow medical advice, and pursue their passions. With the right support, anyone can live a normal and fulfilling life, regardless of their health condition”,she emphasized.
Jeremiah Okeyo a resident of Migori who has been living with epilepsy since 2021 at first thought that it was malaria and ended up using malaria drugs. The condition severe and ended up seeking further medication that later on parents noticed that it was epilepsy
“Using drugs are very expensive to purchase and some are fake thus making the sickness persist for long and a major challenge he encounters is the discrimination by age mates, misconceptions such some saying it is a curse or witchcraft and stigmatization by the society”, said Okeyo
The CEO urged the government to offer free medication to patients living with such conditions since the antiepileptic medication is very expensive and not everybody can afford it thus appealing to the government through the Ministry of Health (MoH) to consider giving it free the way they do with other conditions like HIV.
