Mr Oscar Otieno is one of KAWE’s volunteers based at Riruta health centre. He was three years old when he had his first seizure.
The seizure left him in a coma for 24hrs and for six months, he was incapable of self-care.
People didn’t understand what had happened to an otherwise healthy child. They thought he had been bewitched.
What had started as a malaria like fever turned out to be more than that.
We caught up with Oscar’s mother at their Canaan residence, Kibera and she was glad to share her
KAWE: How has it been for you, raising a sick child?
Mama Oscar: We have faced a lot of stigma. People thought that by going near Oscar the disease would spread to them.
But after coming to know that it is a sickness, then it not longer mattered to us what people thought.
KAWE: Was it a challenge taking your son through school?
Mama Oscar: It was at first, but then I decided I would talk to Oscar’s teachers before he got admitted into a class. I would encourage the teachers not to be too hard.
Oscar had a memory problem which I had observed when we would do homework together at home. So I told them, to just let him do what he could.
In primary school, his class teacher even got him a mattress which was kept in the staffroom. So when he had a seizure, his teacher would
direct his classmates to lay him on the mattress until he was better.
It didn’t go too well in high school. There was a young trainee teacher who was always at logger heads with my son. She didn’t understand why he was forgetting so much. Eventually he gave up on formal schooling.
KAWE: What would you say is the greatest challenge facing people with epilepsy in Kenya?
Mama Oscar: Lack of information. We would request KAWE to produce more books and materials to teach. Also, have more health talks every where.
KAWE: How about parents of children living with parents, how can they be assisted?
Mama Oscar: They need to be fully convinced that Epilepsy is not witchcraft; that way, they will look for treatment.
When they come to the clinic to seek treatment they meet others with the same challenge.
KAWE: Apart from education, what other support do you think people living with epilepsy need?
Mama Oscar: Medicine. Care givers need a way to easily access the medicine. Some patients use different types of medication, and maybe a parent has kibanda, vegetable stand,
sometime I know they send Oscar to pick drugs for them, and after they have sold their vegetables, they refund the cash.
I would say it is the reason why you get defaulters. Caregivers have other dependents, and at times they might have money to buy the drugs, but lack bus fare.
KAWE: Would you like to add something?
Mama Oscar: Yes, When I go to the village, people come to ask me about epilepsy. They know I have a child with epilepsy, and since Oscar also conducts awareness sessions in our village, we have one problem. Whenever I explain about the KAWE clinics, they feel Nairobi is too far.
So they prefer to keep going to the local medicine man.(see map of KAWE affiliated clinics below)
Why not have mobile clinics. You can even talk to the chiefs, and announce on radio that on such and such a date, you will be at a certain location. People will come, you will see, the radio is very effective.
You can even have a show on radio with your doctors discussing epilepsy.
When Oscar is not involved in activities connected with epilepsy awareness, he does beadwork to support himself.
How does he encourage people living with epilepsy?
“Self acceptance is key. I tell them not to view epilepsy as a sickness but simply a challenge that can be overcome.
It is not too unusual and once you find your purpose in life, then you can do so much more.”