May we introduce: Fred Kiserem; an Epilepsy Activist from Kenya and Founder of the .
Favourite activities: Watching movies and reading
Greatest inspiration: Epilepsy warriors
What got me started
Whilst working in Iraq, I had had a few seizures but was in denial. One day, I ignored my aura…and the following tonic-clonic seizure led to a serious arm injury (requiring surgery). From that day on, I decided to look after myself and help other people with epilepsy. I created theto raise awareness about epilepsy and empower its members.
Here you can see an article about my epilepsy story – but even in the article, they have a bad title! I have told them that heat does not make a person have epilepsy! Really this is another misconception which I explain in training.
People should be taught what to do if they have an aura: which is to go and sit a place where they will not hurt themselves, ideally with another person who understands their epilepsy.
The situation in Kenya
So many women with epilepsy in my area of Kenya have been raped or sexually assaulted (this also happens to men, but in our culture, there is an even greater stigma attached to the assault of men, hence we hear about it even less often). Many women with epilepsy are made homeless, where on the street they face the high risks of both sexual exploitation and rape.
For example, this month: a woman was made homeless by her sister because she had epilepsy. Her sister was ashamed of her; believing that she was either possessed by demons or was a result of witchcraft. The morning after she was thrown out, at 5am, a stranger found the woman outside having seizures and having just been raped. I was called, and we took this woman to Kiambu Hospital where she was put on oxygen.
I tried to get the woman’s’ family to visit her…but they refused. They considered her “baggage” and made it clear to me that they didn’t care if she lived or died.
Earlier this year, a young girl had a seizure at home and due to negligence, the family refused to take her to the hospital. The poor girl died as a result.
Those living in more remote areas of Kenya are particularly vulnerable to being ostracized by family and communities due to modest levels of education. Many are neglected and even excluded by friends, family, and society, often ending up in prostitution or with alcoholism. Infanticide is also encouraged by some who think that a baby may be cursed
Rates of epilepsy in Kenya
In Kenya, we have a high rate of epilepsy:The cause of the high rate:
“One of the main reasons for the higher incidence of epilepsy in developing countries is the higher risk of experiencing conditions which can lead to permanent brain damage. These conditions include trauma, meningitis, HIV/AIDS, malaria, pre and perinatal complications and neurocysticercosis”
- Ministry of Health, Kenya National Guidelines for the Management of Epilepsy
Poverty and AEDs
Epilepsy is a very big challenge to live with if you if you don’t have a stable income. Those with disability struggle to get by, day to day. There is an unemployment crisis in Kenya, with 36.1% of Kenyans still living on less than USD $1.90/day. In rural areas/informal settlements are existing in extreme poverty, meaning that many of them are simply unable to afford AEDs.
AEDs are not tightly regulated in Kenya and about 37% of the tablets are of “poor quality” also. According to the Ministry of Health: “Compared to high-income countries that have a treatment gap of less than 10%, Kenya has an estimated treatment gap of close to 80%.” This means that between 640,000 and 800,000 people with epilepsy in Kenya aren’t receiving treatment, which is awful for the quality of life – for patients and for friends and family.
Our public talks
I provide many talks and epilepsy awareness campaigns to both children and adults around the year, to make epilepsy not a scary thing for people and to reduce stigma. We don't want people to be ashamed of their condition.
I’m aware that there are a lot of forms of discrimination faced by those with epilepsy also in the West, and I hope that across the miles we can work together to improve awareness and support for those with epilepsy across the world.
We are trying very hard to improve the level of education regarding epilepsy and supply of good AEDs in our part of Kenya. If you would like to know any further information about our work and how you could support us, please check out our website/contact us via the details below.