Sixteen year old Atagona Kwame lives with his parents at Anateem, a small farming community in Ghana. The land is dry with sparse vegetation. The community is poverty stricken, their nutritional status low and their sanitation facilities vastly inadequate. Life in Anateem is hard for the whole community but few have suffered more than Kwame who has had to live with the extra burden of epilepsy since he was nine years old.

Epilepsy is common in Ghana, neither untreatable nor incurable. However, poor access to medication coupled with the social stigma attached to his condition has made Kwame a social outcaste. In Ghana there is a popular misconception that epilepsy is communicable and that those affected have been inhabited by “demons” or “spirits”.

Families affected by epilepsy often face ostracization and isolation from their community. Kwame’s neighbours have warned their children against associating with him and his siblings and some people even flee when they see him in the street. As Afibgri, Kwame’s mother explained, “Sometimes when I am walking with Kwame, people run away. They say his sickness is communicable.”

Kwame has received a similar reaction at school. He says, “My classmates won’t allow me to sit with them; they will not lend me any of their things. They won’t share their food with me, and, as much as possible, they avoid any contact with me.”

Kwame was just nine when he began to experience epileptic seizures. At first his family spent much of their time in the regional hospital because access to medication in Anateem was inadequate for Kwame’s frequent and unpredictable seizures. Kwame was eventually referred to the Psychiatric Unit of the hospital where he was diagnosed with epilepsy.

His diagnosis and subsequent treatment led to substantial improvement in his physical condition. However, the continuing rejection from his community took a heavy toll on Kwame and eventually drove him to attempt suicide in 2001.

BasicNeeds came across Kwame at a field consultation in Navrongo, his nearest town, in May, 2004. For the first time Kwame was given the opportunity to talk openly about the isolation and the sense of desolation that his condition had caused him. As a result of this meeting, BasicNeeds began work to improve Kwame’s access to medication and ensured that he received regular visits from a Community Psychiatric Nurse who could monitor his recuperation and help him reintegrate into his community. BasicNeeds also became active in challenging the stigma and misconceptions that Kwame’s community, like many people across Ghana, attach to epilepsy.

Three years on Kwame’s life has changed immeasurably. BasicNeeds’ support has boosted his self confidence and attitudes within his community are rapidly changing.

As Kwame explains, “The way my friends and neighbours behave towards me has now changed drastically. They feel I am important because visitors come to me instead of going to the chief. My colleagues respect me and treat me as a part of them.”

There are still difficulties in Kwame’s life. Despite the help of BasicNeeds, Kwame’s family struggle to meet the cost of school fees and the drugs that maintain his seizure-free condition. His English remains poor. He attributes this to lack of company in school where some of his classmates continue to avoid him. However, despite these issues, Kwame is optimistic about his future and hopes that one day he can fulfil his aspiration to become a doctor so that he can help other people suffering from epilepsy.

Lewis Garland