In a groundbreaking effort to tackle the stigma faced by children with epilepsy in Sub-Saharan Africa, three nations – Zambia, Malawi, and Lesotho – have united to promote inclusive education and combat discrimination in schools. Recognizing the urgent need for change, these countries are taking decisive steps to ensure that children with epilepsy have equal access to education and are supported in their academic journey.

Recent surveys conducted by the Epilepsy Association of Zambia and the Breaking Epilepsy Silence in Malawi project have uncovered distressing realities. In Zambia, the survey titled ‘Out of School Children with Epilepsy: Epilepsy and Education Survey’ revealed a lack of appropriate education opportunities for many children with epilepsy. Meanwhile, in Malawi, the project discovered that children with epilepsy faced severe discrimination from both teachers and peers within school settings. Additionally, in Lesotho, children living with disabilities were often left invisible in education and training statistics, making them highly vulnerable.

Motivated by personal experiences and a deep desire to eradicate stigma, individuals from each country’s epilepsy associations have come together to form a united front against discrimination. Mampiti, a passionate advocate from Lesotho, shares her determination to help people like her sister, who has faced stigma in the community since 1969. In Zambia, Betty, who personally lives with epilepsy, recalls the support she received from her parents and the understanding of her teachers and friends. Witnessing gaps in parental care and self-stigma faced by children with epilepsy, Betty is committed to changing the narrative and promoting inclusive education in her country.

To address the multifaceted challenges, the project has established two main goals. The first is to increase access to education for children with epilepsy (CWE). The second goal involves implementing the Engagement Education Inequalities pathway, which aims to link teachers across the three countries, fostering peer-to-peer support in handling CWE and promoting inclusive practices.

To demystify epilepsy and dispel prevailing myths, the project focuses on providing comprehensive information on the condition and its treatment. Through a participatory action approach, the project engages parents, teachers, and community leaders in developing a scalable pathway for inclusive education. Awareness, Training, and Engagement (ATE) serve as key elements in this transformative process.

Stakeholders, including schools, communities, and health workers, play pivotal roles in dismantling stigma and promoting understanding. By engaging directly with schools, the project aims to address knowledge gaps and influence enrollment guidelines, ensuring equitable learning environments for CWE. Community leaders have also been actively involved, facilitating community buy-in and raising awareness about epilepsy. Health workers contribute their expertise, providing medical information and responding to questions during training sessions.

Though not without challenges, such as coordinating project timelines with school calendars and obtaining authorization from relevant ministries, the project has made notable strides. In Malawi, during stakeholder engagements with schools, the project identified a pupil who had dropped out due to stigma and recurring seizures. Prompt intervention and the provision of appropriate medication have resulted in improved health for the student, while efforts are underway to equip both the student and the school with strategies to overcome stigma and enable a successful return to education.

Lessons have been learned along the way. The project highlights the pressing need for collaborative efforts to reduce stigma and create inclusive environments within schools. Capacity building for children with epilepsy is crucial to prevent school dropouts and ensure their educational success.

Through the lens of captivating photographs, we witness the project’s impact firsthand

Photo 1: EAZ – Betty with Clinical Officer and 4 teachers from Kasanje Primary School after the presentation on Epilepsy and stigma

Photo 2: Epilepsy Lesotho – Nthabaleng and Mampiti with members of the school board after the meeting on epilepsy and stigma in the community