Knowledge about the epilepsy epidemic is Uganda is very limited. There is no certain cause and people are very fearful of it. GLO has decided to raise awareness and understanding of epilepsy to improve acceptability, treatment, and services for the patients, families, and caregivers in Masindi. Many of those affected by it are young children and most of them are missing school.
Other children are fearful of them when they have seizures and the teachers aren’t trained on how to care for children when they are having an episode making the children not want to return to classes in fear of having a seizure in front of their peers.
What sets Guiding Light Orphans apart from other NGO’s is the ability to cater to not only the communities needs, but to their requests as well. The locals have asked for help with a great challenge; epilepsy. According to the Epilepsy Foundation, epilepsy is a disease where a person suffers from “recurrent unprovoked seizures”.
Certain areas of Masindi have seen an incredible increase in the cases of epilepsy that have afflicted entire families. The reason is still unknown.
Dr. John Turyagaruka, the head doctor that GLO uses in Uganda, reports that this area of Uganda has been neglected for years and lacks the ability to have the environment thoroughly tested for the possible root causes for their epilepsy. He goes on to say that this area has one of the highest rates of epilepsy in the world.
GLO ANSWERS THE CALL
During several medical camps, Jolly, and her husband Kurt, saw rising numbers of individuals afflicted with epilepsy. Many of those individuals have physical scars from falling in a fire during an epileptic seizure or from falling hard on the ground. There is a negative stigma attached to epilepsy in this area and those suffering from it are shunned by others who don’t understand the disease.
What does it mean to have epilepsy in Uganda? For a man, it may mean being too weak to go to work and supply the little income used to try and sustain the family. For a woman, it may mean the departure of her husband who refuses to be with her in her condition. This may potentially even mean leaving a sick woman to care for her children alone. For a child, epilepsy means the continued absence of schooling.
BREAKING THE STIGMA
Misinformed and skewed perceptions about epilepsy are the reasons why people suffering with epilepsy are stigmatized. For this reason, we've decided to hold an outreach clinic every month for adults and children. They receive education on management, counseling, and treatment for their epilepsy and any other health issues as well.
Guiding Light Orphans staff provides educational programs through informational gatherings, reading materials, and posters on epilepsy. The hope is to decrease the social stigma and to promote a change of attitude towards people who suffer from the condition.
We have chosen ten Peer Epilepsy Ambassadors (PEAs), all of whom suffer from epilepsy and are receiving treatment thanks to GLO. The PEAs receive specialized training in the causes, impact, and medical management of epilepsy. Because they are all epileptics themselves who are benefiting from GLO’s services, they speak from experience with empathy and gain the respect of other epileptics.
They are effective in helping break the stigma of the disease, which usually isolates the affected from the community, and in enabling them to take advantage of medications and resources. They work hand in hand with the VHTs to encourage the epileptics to accept help and attend medical camps and epilepsy clinics.
At GLO, we seek to empower these individuals suffering with epilepsy and let them know that together they can work together to have their needs be addressed and to be treated with the dignity they deserve. We are looking at introducing micro-economic projects for our epilepsy ambassadors so they can be self-sustaining members of their communities.
HOW GLO IS HELPING
Recognizing the immediate need in April of 2015, GLO organized a training for epilepsy management for our village health team members, an epilepsy specific medical camp that treated 156 patients and then started our new epilepsy outreach program which is held on a monthly basis.
The first monthly outreach clinic started in May 2015 and served 140 patients with epilepsy in one day. Not only does the clinic provide medications and counseling for those with epilepsy, but it also treats their other ailments as well.
Our VHT’s travel the villages on a regular basis to inform those in need of our upcoming camps and our future clinic so that they can get access to the services they need. By providing treatment, counseling, and education, we hope to effectively treat all of the people in the area that are suffering with epilepsy and remove the stigma from it as well.
One of our ambassadors now takes his daily medications and has been able to return to planting and harvesting in his tobacco field. Prior to this, he was too weak and his crops spoiled. This is an amazing turnaround for an individual who believed he would never get better. When the community calls, GLO answers, and lives are changed!
Our objectives for our epilepsy program is to:
Increase in knowledge about how to prevent and manage epileptic seizures
Change in behavior so that patients are more willing to share their disease challenges
Improved community-based education, sensitization, and awareness of epilepsy which will diminish stigma and discrimination
Improved skills by both CHWs and PEAs on how to interact with patients
Increased involvement in community health by local leaders
Improved access to information about diagnosis, treatment, strategies for injury prevention and self-management skills
Increased sense of the individual’s/family’s sense of empowerment
How you can help
By donating $700, you will provide medication, distribution, and counseling for over 200 patients for one month
By donating $1,400, you will provide medication, distribution, and counseling for over 200 patients for two month’s