Ronex Bondo (Project Intern)
People with Epilepsy in Rwanda are often treated as being possessed by demons
Global Epileptic Connection (GECO) is a Rwanda-based organization, established in 2010 to fight stigma and discrimination surrounding epilepsy. GECO’s vision is to see people with epilepsy across Rwandan society attain full rights without any social injustice.
The organization’s Chief Executive Officer, Mrs Chantal Kanyabutembo, lamented that the explanations for epilepsy encountered in the work of her organization lead to stigma and discrimination among persons with epilepsy, and particularly so for women and children. Women with epilepsy face rejection even by members of their own family, as they are often prevented from getting married or treated as outcasts. Children with epilepsy can find it difficult to access education and face bullying at school.
She said, ‘People with epilepsy are often treated as being possessed by demons and many pastors or religious healers pray for them and discourage them from continuing to take their medication. Witch doctors also prefer to switch the patient to treatment by rituals, encouraging them to abandon their medication and, as a result, the country used to register many cases of sudden death amongst patients with epilepsy’.
Chantal Kanyabutembo shared with us her personal story of the stigma she experienced as a person with epilepsy. At the age of 11 she was diagnosed with severe absent and partial general tonic seizures, with six seizures a week. Relatives advised her parents to rely on witchdoctors, but they refused and took her to a mission hospital, where she was treated as an outpatient.
She faced many challenges in pursuing her education. Many schools denied her access and asked her parents to first treat her and stabilise the seizures so that she might join the school later to continue with her studies. When she had a seizure during an examination, her appeal to re-sit the examination was refused and she was put back a year.
Though her journey through school was challenging, even after graduating with her first degree she continued to face discrimination and struggled to get a job. When she founded GECO, she faced stigma amongst professionals who had same thinking that she was not able to fulfil her role, but she followed her passion to help patients with epilepsy and to raise awareness about the challenges faced by people with epilepsy in Rwanda. Even many of her closest friends and relatives who pretended to help her told others that she was not normal, or that she was possessed by demons, and she was unable to find a marriage partner.
Chantal Kanyabutembo’s success story as a person whose epilepsy is well-controlled by medication and who has formed a national non-profit organization which helps many people, is an inspiration to many. Drawing on her own experience, she has led GECO in educating the general public about epilepsy, conveying important messages that epilepsy is not contagious and not related to witchcraft. GECO has managed to change attitudes in Rwanda and the organization’s engagement with the media has played an important role in this awareness raising.
Today, GECO is a recognised national trust team whose main objective is to reduce the risk of misdiagnosis, to improve drug availability in all district clinics and hospitals, to improve the training of doctors and to enhance awareness to eliminate stigma. GECO collaborates with other international research institutions as a member of ILAE (International League against Epilepsy) and IBE (International Bureau for Epilepsy).To find out more about the work of GECO, visit their website: https://gecorwanda.com/