WHAT WE DO
Mobilization and sensitization
ESAU mobilizes people with epilepsy, their parents and guardians to form support groups. Through these groups, persons with epilepsy learn from each other and share experiences on how to positively live with epilepsy. They share problems and challenges and learn from each other how to solve such problems. Groups also create a sense of togetherness and members are also equipped with skills on how to become economically self supporting by engaging in income generating activities. The Association has trained 402 community volunteers in total, equipped them with bicycles, for ongoing awareness raising, to participate in community mobilization, offer simple counseling and referral for PWEs(Persons living with epilespy).
ESAU organizes its members to elect its leaders both at Sub County and District levels. The groups are encouraged to register with their respective Sub counties as Community Based Organizations (CBOs). In these groups members are trained in advocacy, leadership skills and Income Generating Activities, finance, reporting, group dynamics, records management, mobilization skills and simple counseling. PWE have empowered to be able to change their lifestyles which have often been characterized by abject poverty due to isolation, social discrimination, stigmatization, marginalization, fear to participate in economic activities, low levels of education compared to other people in the communities.
Lobbying and advocacy
ESAU lobbies and advocates for the rights of people with epilepsy like the right to regular medication, education, ownership of property. ESAU engages Districts, and central Government bodies to take epilepsy as a priority and to accept PWE in the communities as important citizens. The Association empowers sub county and district branches to advocate for better service delivery and enhance their capacity to hold duty bearers accountable.
ESAU is a member of Voices of Health Rights Coalition (VHR) and has managed to network with NUDIPU (an umbrella organization that brings together all disability organizations in Uganda), and Ministry of Health. ESAU has established and strengthened networks such as Human Rights Network (HURINET), NGO Forum and Uganda National Health Consumers’ Organization (UNHCO). It is also a member of International Patients Organization (IAPO). ESAU is a member of the International Bureau for Epilepsy (IBE) and currently holds the post of the Vice chairperson of the African regional Commission of the IBE.
Counseling and Referral at the Secretariat
ESAU offers counseling about epilepsy, seizure management and how PWE can positively live with epilepsy. We also provide information on education and employment. At the secretariat we refer PWE to public Hospitals and Health centers for diagnosis, medicine and treatment. The secretariat also has a documentation centre and periodically publishes a magazine outlining topical issues on epilepsy in Uganda. The Secretariat has become a more visible referral point for those seeking counseling on aspects of epilepsy and their lives.