Epilepsy is a chronic brain disorder that baffles many Kenyans. Some associate it with witchcraft, while others do not know how to handle an epileptic person having seizures.
Many do not know that once the disease gets proper treatment, seizures will reduce and one will live a normal life.
To create awareness, Fredrick Beuchi walked 480km in 12 days from Nairobi to Mombasa. He started on July 31, and upon reaching Mombasa, he had blisters all over his feet and was limping as he’d walked in the scorching sun.
But it was worth it, he said. Many people are now informed about the disease. What drove him to be an epilepsy activist is his sickling sibling, who was just two years old when she was diagnosed with epilepsy.
This was a big blow to his entire family and a big problem they had to go through.
Coming from Kwale county, where epilepsy has mostly been associated with witchcraft, the family was stigmatised by many.
“At the time when we were looking for medication for her, many people were saying she was possessed or black magic was used on her,” Beuchi said.
What hurt him most was some people saying the family were trying to give her out as a sacrifice so they could get riches.
The family went to different hospitals, where they were given different medication for his sister that did not help. It seemed as though she was doomed.
What made things change for the better was when there was a free epilepsy medical camp in Nairobi in 2013.
This was an Epilepsy Open Day organised by the National Epilepsy Coordination Committee. It was advertised on different media, and Beuchi felt it was worth it to travel from Mombasa to Nairobi to his sister a chance at having a normal life.
Upon reaching Nairobi, he got a chance to see a specialised doctor, and he explained his sister’s condition.
“My ambition to travel all the way from Mombasa to Nairobi moved the doctor. He saw the need to come back home with me so he could test her, know what kind of epilepsy she was suffering from, and later on start her medication,” Beuchi said.
Her seizures used to come every 20 minutes. But after getting the right medication, now at 12 years, she has not had any seizures for three years. While previously she was in and out of school for seven years, now she is back to class full time.
The sister had very few friends, as many people thought the disease is communicable. They ran away from her for fear she would pass the disease to them.
“Having seizures is one of the traumatising things many people fear and run away from,” Beuchi said.
His goals are ensuring people should know that epilepsy is treatable, that it is non-communicable, what first aid one should give an epileptic experiencing a seizure. He also wants to remove the notion that epilepsy is associated with witchcraft or it means that one is possessed.
Beuchi joined the National Epilepsy Coordination Committee, and through it, his sister got to see an epileptologist.
After she got medication, he decided to become an epilepsy activist in 2014, so he could be a voice for patients.
‘ANGAZA KIFAFA’ CAMPAIGN
NECC organised a campaign called ‘Angaza Kifafa’, which was launched on August 15 in Mombasa and 16 in Kwale county and supported by the county governments.
It has since reached 11 other counties and intends to cover all the counties so that people get educated on the disease.
The campaign involves training of doctors by epileptologists and neurologists. It also includes a road show meant to educate the public and equip community health volunteers to follow up on cases arising.
It aims to raise awareness while ensuring epilepsy treatment is available, accessible and affordable. The cause has drawn the backing of Bank of Africa.
“Bank of Africa is keen to address the needs of people living with epilepsy, because it imposes a physical, social, psychological and economic burden on individuals and families,” BoA MD Ronald Marambii said.
“Many people living with epilepsy in Kenya suffer in silence as they are socially isolated and do not go for treatment due to the stigma the condition has carried for centuries.”
Epileptic Samuel Kangawa, 25, said they should be identified as disabled, so it would be easier for them to get medication.
A big problem they face is that at times when looking for medicine, they are being told their medication is not on the government’s budget.
“People like us are not noticed and we want to be identified so that the government can set aside a budget for our healthcare and medication,” Kangawa said.
He is a leader in a group known as Saidia People Living with Epilepsy based in Mombasa, which aims to help people living with the disease.
Some of the other problems epileptics face, Kangawa said, include stigmatisation and family members not accepting them the way they are.
He is living testimony that proper medication improves the condition. “I used to get seizures daily ever since I was a child. Now that I am under medication, I get them once a month,” Kangawa said.
SURVEY IN PROGRESS
The Mombasa government flagged off the ‘Angaza Kifafa’ campaign on August 15.
It urged residents with the disease to come out so the number of epileptics can be known. Some families hide patients for fear of stigmatisation.
The county government is also doing a one-year programme to provide free NHIF cover for epileptics so they can get proper medication.
Youth chief officer Farah Mohamed said a survey is currently being conducted to identify them, especially in suburbs, where such cases are suspected to be high.
“When we know their number, in conjunction with the Health department, we will look for a way to help them, because the main problem we know they are facing is getting access to medication,” Mohamed said.
He urged residents not to hide epileptic children but bring them out instead so they can get help. “Our community has related epilepsy to witchcraft or being possessed, which is not the case,” he said.
So far, the county has trained community health volunteers and social workers to deal with epilepsy cases.