Members of ESAU are the owners of the Association and operates through support groups The Association has sub county as the lowest level then the District and National.
The sub counties elect seven members to the District Assembly while the District Assembly elects seven members and two substitutes/delegates.
Membership to this Organization is open to all persons with epilepsy, their relatives and any community members or professionals that have interest in working with persons with epilepsy.
How to register
A person pays 2000/= (Two thousand shillings only) and receives a membership card issued by the secretariat.
We encourage persons with epilepsy who receive treatment at a particular health unit to meet at least once a month.
Why do people with epilepsy need to be in groups
· To have a united voice when advocating for their rights.
· To contribute towards their medication to reduce the costs of buying on a personal basis and ensure sufficient supply
· Government listens and respects people who are organized in groups.
· To come out of the shadows and be counted among those whom government has to plan for.
Awareness using Forum Theatre
Forum Theatre is an interactive form of theatre that encourages audience interaction and explores different options for dealing with a problem or issue and it is often used by socially excluded and disempowered groups. ESAU is using this tool by staging shows to provide accurate information on epilepsy through Sensitizing young professionals and community members on epilepsy in order to enhance a better understanding of epilepsy. Currently ESAU is using this tool in Acholi sub region covering the 4 districts of Amuru, Gulu, Pader and Kitgum.
Focus for the future
-Support all our sub county branches to register as Epilespsy Self Help Associations so that they are able to support and sustain themselves.
-Support District and Sub county branches to develop and submit applications for funding
We encourage you to join this association
Benefits of being a member of ESAU
-Learn more about the causes, prevention and management of epilepsy.
-Share experiences about living with epilepsy.
-Get support and counseling
-Acquire skills in improving their households incomes .
-Access regular epilepsy Medications.
-Lobby and advocate for their needs and rights
Epilepsy Support Association Uganda
Epilepsy Support Association is the only registered national organization that brings together persons with epilepsy with the main aim of fighting for their rights. Started in 1997, the Association is a user-governed Non-governmental organization that works to improve the quality of life of people with epilepsy.
The association currently operates in 40 Districts of Uganda that include Apac, Adjumani, Amuria, Arua, Bushenyi, Hoima, Jinja, Kabale, Ntungamo, Oyam, Soroti, Kampala, Serere, Sheema, Buhweju, Kaberamaido, Katakwi, Kumi, Luweero, Masaka, Mbarara, Mpigi, Moyo, Nakaseke, Gomba, Butambala, Lwengo, Kole, Kwania, Ngora, Bukkedea, Kalungu, Bukomansimbi, Kamuli, Sembabule, Maracha, Gulu, Kitgum, Pader and Amuru
The Association is democratically governed by the members who elect a local executive committee at sub-county and District levels. Each District branch then sends two delegates to a national assembly that elects a national board.
The Association is guided by her constitution which among other main articles empowers People with Epilepsy (PWE) by guarantying two thirds of all leadership positions at any level of the association to be occupied by PWE themselves. It is therefore not a surprise that five out of the Nine members of the national BOD are persons with epilepsy
A Ugandan society in which epilepsy is understood and PWE are treated with dignity so that they can exercise their full potential and participate in all developmental processes.
To become the leading organization that empowers people with epilepsy to participate in development processes through advocacy, networking research and documentation.
To build an Association in which PWE, their relatives and guardians are empowered and participating in advocacy and lobbying for their rights in achieving of dignity and equal opportunities.
To empower ESAU structures engage decision makers at the district and sub-county levels for effective service delivery.
To create awareness among PWE, their relatives, health workers, opinion leaders and the community so they understand epilepsy and are able to support PWE
To build network and alliances through which ESAU can advocate for the rights of people with epilepsy
WHAT WE DO?
Mobilization and sensitization
ESAU’s main activity is to mobilize people with epilepsy, their parents and guardians in support groups. Through support groups, persons with epilepsy learn from each other and share experiences on how to positively live with epilepsy. In these groups PWE 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.
ESAU organizes its members to elect its leaders both at Sub County and District levels. In these groups members are trained in leadership skills and income generating activities. ESAU trains volunteers in financial skills, group dynamics, records management, mobilization skills and simple counseling
Lobby and advocacy
ESAU lobbies and advocates for the rights of people with epilepsy i.e. the right to regular medication, education, ownership of property etc. In this capacity ESAU engages Districts, and central Government bodies to take epilepsy as a priority and to accept PWE in the communities as important citizens who should be involved and consulted in all planning processes
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, employment & refer PWE for comprehensive medical assessment. ESAU has a documentation centre & periodically publishes a magazine outlining topical issues on epilepsy.