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Challenging epilepsy in sub-Saharan Africa

WHY EPILEPSY?

Epilepsy is one of the most common serious neurological conditions and is particularly widespread in sub-Saharan Africa. This high incidence is, in at least a quarter of cases, because of preventable factors, yet many people who may have had seizures are not diagnosed and even fewer receive appropriate treatments. These factors are compounded by enduring social stigma that can make it hard for Africans with epilepsy to obtain employment, form relationships or feel valued.

Global map of disability-adjusted life years caused by epilepsy

Disability-adjusted life years per 100,000 caused by idiopathic epilepsy. Data from https://vizhub.healthdata.org/gbd-compare/

OUR AIMS

From 2019 to 2024, the EPInA team will work in Accra, Nairobi, Kilifi, and Mahenge to improve all aspects of the treatment pathway: prevention, diagnosis, treatment and awareness.

Prevention

EPInA aims to reduce the incidence of infection and peri-natal injury in an endemic region in Tanzania and thus the subsequent risk of epilepsy. We will work in collaboration with the Tanzanian Onchocerciasis Programme to reduce the transmission of onchocerciasis and examine the Mahenge community's view of epilepsy and seizures through ethnographic research.

Diagnosis

We propose to improve fundamentally the diagnosis of convulsive and non-convulsive epilepsy in rural and urban communities in the selected countries, by providing a deeper understanding of epilepsy through qualitative ethnographic research; developing apps to improve diagnosis accuracy; and then using these apps in cross-sectional surveys to identify non-convulsive as well as convulsive seizures. In particular we will train primary healthcare workers to be able to better recognise and detect seizures, ensuring an enduring legacy of the project.

Treatment

The care of people with epilepsy in sub-Saharan Africa is hampered by lack of healthcare staff trained to manage epilepsy, erratic supply of anti-epileptic drugs, and poor adherence. We will address these barriers by providing training in Mental Health Gap Action Programme (mhGAP) guidelines for the management of epilepsy, and conducting a randomised controlled trial of short messaging service (SMS) to improve adherence. Using the ethnographic research and surveys conducted, we plan to evaluate the implementation of mhGAP guidelines in all sites.

Awareness

Knowledge-exchange workshops, the use of social media, supporting communities to make participatory videos, the creation of YouTube channels and collaboration with local radio stations will all help improve the reach of EPInA. Through better understanding of the past and the reasons that underpin stigmatisation, we hope to disentangle prejudices and thereby improve quality of life for people with epilepsy.

Picture of Fredrick Beuchi's 'Epilepsy Awareness Challenge' documentary.

OUR PARTNERS

WHY EPILEPSY?

OUR AIMS

Prevention

Diagnosis

Treatment

Awareness

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