Mr Daniel Otieno Okello, a lead volunteer at KAWE’s Huruma Mathare Epilepsy clinic had his first seizure at the age of 13.
He didn’t quite understand what it was since he only remembered being on an errand, then waking up on his bed later. Some friends explained he had had started to shake then fallen down. When he got up, he had a headache.
A year passed without another incident, then one night he had his second seizure.
‘Another time I went to wash in the dam and had a seizure, I almost drowned but a teacher was around and he rescued me. ‘
Since Dan’s parents had passed away earlier on, he was living with his elder brother and his wife. The brother tried to get information from relatives; aunties and grandparents as to how the disease might have come about.
‘They suggested herbal drugs and I was on one herbal treatment to the other.’ Dan explains.
One of the traditional treatments was to pour water into his nose twice a month.
‘So in case I felt ill and it was not time for the water treatment, there was nothing anyone could do.’
Instead of reducing, the seizures increased.
‘ I had a seizure every week and it was even difficult to attend school regularly.’
People talked a lot, they would say:
“This one has epilepsy, he will not live very long.” Such comments hurt him a lot but he had courage and hoped that one day God would help him find treatment.
He could not attend boarding school because of this, so he attended a day school.
‘School was hard because, I loved football, but now I could not play. I had become a mere spectator’
But he didn’t want to be classified as ‘special.’ So after school he started to do business.
His brother was still trying to get treatment for him, and in 2001 a fundraiser was organised.
‘When we went to the herbal clinic, they told us that to start treatment, we needed to part with Ksh 10,000. It was too much.’
A short while after, Dan’s Uncle found out about KAWE, and asked Dan to come and stay with him in Nairobi.
At the clinic, Dan could not believe that most of those in attendance were patients. All this time he had assumed he was alone in the world.
At that time, the clinic was looking for Community Based Volunteers. He volunteered for one year.
The encouragement was really great but even more helpful was that after starting treatment, the seizures gradually reduced.
A month would pass without me having a seizure.’
Then months would pass, without a seizure.
‘I felt I had acquired a new freedom since I didn’t need to focus on when I would have the next seizure.’
He experienced great change, and when he went to visit his home area, he decided to give lectures about epilepsy in the community.
Due to volunteering and the health talks he had received at the KAWE clinic, he was able to talk to people about epilepsy, and since they knew how much he had suffered before the medication, they would believe him. They could see the change in him and even the stigma stopped.
Dan is a loving father to four children, the first born a high school teenager at the time of writing this story. His family supports him and understand his condition.
‘Every evening after meals, one of my children will volunteer to bring me my medication.’
When he met his wife, he explained to her he had epilepsy. But she was fine with it.
‘I gave her as much information as possible and even brought her to KAWE to learn more about epilepsy. We did think about the chance of our children inheriting the illness from me but decided it was too small a chance to avoid having children.
In his own words
- A person living with epilepsy should seek the right treatment.
- Attending your allocated clinic is very important, the follow up records are very important to help in your treatment regulation.
- When you start medication, do not stop without consulting with your doctor, even if the seizures may have stopped.
- Get as much information as possible about your condition
• When one parent has epilepsy the chances of their child inheriting the condition is just 6%.