About ESAU
As follow up on activities of ESAU old and current branches and continued lobbying for support to these groups by their district Local governments, ESAU visited Kaara subcounty members in Rubanda district to monitor progress of the projects that were initiated since they started working with those members. ESAU went ahead to visit the district officials to lobby and advocate for inclusion of persons living with epilepsy in the development programs at all levels. The meeting was attended by two ESAU staff and seven group members at the branch level while twelve CDOs were present at the district meeting.
To assess the progress of the projects
To find out the available opportunities from the district and government at large for the members to lobby from.
To find out the needs of the children living with epilepsy and address them accordingly
To lay strategies for support to ESAU old branches from their local governments & Partners
The following were observed
- The project started in Kabale district in 2004 up to 2014 when funds reduced and ESAU could no longer afford to run her activities in the region
- As a result, members were encouraged to pick up from where ESAU had reached and keep the projects alive which they did.
- There is need to continue creating awareness and sensitization of communities about epilepsy
- Epilepsy is a chronic illness
- Majority of the people have limited knowledge about epilepsy
- Members need to start up livelihood projects and create linkages to government for sustainability
- ESAU had identified 56 health centers to serve persons with epilepsy in Uganda and most of them are still active
- People in this region still relate epilepsy to demonic attacks thus need for more sensitization
- A lot of people with epilepsy are still hiding in the villages
- Kaara group wrote a proposal to Bwindi National park and they were given funds worth two million six hundred fifty thousand shillings(2,650,000) to support the project of building stoves which protects PWE from getting burnt by fire while cooking. The project is doing well and members were encouraged to work harder and beautify their project for more funds and sup[port from Bwindi National park
- The CDO Muko subcounty secured funds from CDD and distributed to Kaara group who started a project of growing Irish potatoes and later expanded and started constructing cooking stoves
- The director took members through a session of causes of epilepsy, medication and management of seizures. Most people seemed to have limited knowledge about epilepsy, its causes and how to treat it.
- The director argued branch leaders to build capacity of parents of children with epilepsy to be able to continue accessing medicine and keep their children in school
- Kaara members were called upon to lobby at the district level for any form of funds that would be available.
Drug banks were started in private health centers and are still operating successfully
Kaara group received 2.650m from Bwindi National park and started a project of constructing Lorena cooking stoves and it is doing well
They have so far constructed 72 improved stoves in different families of people with epilepsy
The CDO Muko subcounty secured funds from CDD and gave to Kaara group to invest in their project of building stoves which they did
A certain student escaped from school as a result of an attack and he has not been seen up to now
People with epilepsy are most vulnerable to fire burning while cooking and this calls for more support into the project of constructing stoves
The supply of medicine is not reliable most of the time
Rubanda district was greatly hit by floods which claimed many lives of people including a Reveland Father and many gardens were washed away which resulted into acute famine.
DCDO Muko subcounty gave the following remarks;
He thanked Mr. Karutokye Henry for fighting for the rights, health and lives of people with epilepsy
He encouraged members of Kaara to make their groups more coordinated to improve their popularity in the area
He asked all members to identify their addresses for easy access and coordination
He went ahead and asked Kaara group to construct more improved stoves and he promised to market their project
He advised them to integrate into other different activities alongside piggery, goat rearing and do things such as basket weaving, making bricks, tailoring in order to expand their income capacity
He concluded by calling upon all stake holders to identify any cases of epilepsy in their communities and spread the news about epilepsy
CDO Hamurwa subcounty asked about a case where a child becomes unconscious while in sleep without any seizures, and wondered whether that is epilepsy. He was advised to refer that condition to the hospital in the Mental health department
The inspector of Health Hamurwa district intervened and explained different causes of epilepsy such as birth injury, untreated/prolonged malaria, brain damage, phobia about water, glittering things among others
He therefore called upon all parents of children with epilepsy to teach their children so that they may get familiar with the symptoms of seizures such that they might be prepared in case an attack occurs. This is because most seizures show signs before occurring.
He assured members that psychiatric nurses are available at all health centers in Rubanda and Kabale districts so people should always visit them for consult
He advised members to create linkages with their CDOs for easy access of sustainability programs
A member interjected and asked about what happens in cases of failure to adhere to the treatment, and the response was that “One learns to manage the condition with continued taking of medicine.”
Rubanda district as a whole pledged dedication to support groups of people with epilepsy and thanked ESAU team for the good work they are doing.
They requested for soft copies of brochures for more information and guidelines about epilepsy management
He promised of free airtime on radio so that ESAU and her group members can use the opportunity to sensitize and create awareness about epilepsy to the public
Epilepsy groups in Rubanda district were encouraged to embrace other projects in existence to raise their voice to the community through successful works