Epilepsy in Kenya

A Documentary Film Project

Worldwide an estimation of 65 million persons is faced with the condition epilepsy (KEMRI Kilifi, 2010). The chance of getting epilepsy is almost three times higher in developing countries compared to developed countries. In Kenya, an estimated 800,000 Kenyans live with the condition and a majority of them experiences challenges to live beyond their epilepsy due to the stigmatization and lack of accessible, affordable and reliable health care provision.

Many Kenyans confuse epilepsy with witchcraft, demon possession, a worm in the brain and they often think it is contagious and God’s punishment. In stead of going for reliable medical treatment, 80% of Kenyans makes use of the herbalist (Daily Nation, April 2009). Only 20% of Kenyans with epilepsy take reliable Anti-Epileptic Drugs (research KEMRI, 2008). This hinders them to equally participate in society. They are often excluded from school, work, church and other social activities.

In this context and because of the bad situation of people with epilepsy in Africa, the International League Against Epilepsy and the International Bureau for Epilepsy will host the first African Epilepsy Congress in Nairobi from 21st-23rd June 2012.
More than 40 local, regional and international speakers will present a range of topics over three days that are highly relevant to recent scientific, clinical and social developments in epilepsy.

There are already only a few Non-profit-organizations dealing with the issue “Epilepsy” in Kenya. One of them is “Youth on the move”. Youth on the Move (YotM) is a young organization launched in the Netherlands in 2006 and later in Kenya in March 2008. YotM is an initiative of, by and for the youth with epilepsy that combats the misunderstanding and prejudices about epilepsy. Every year, YotM trains six youths with epilepsy and six youth without epilepsy to serve as professional youth coordinators who attend Medical Clinics coordinated by Kenya Association for the Welfare of People with Epilepsy (KAWE) on a weekly basis to guide youth with epilepsy to utilize their full potential in life.

Concept of the film

The film is about epilepsy in Kenya and “Youth on the Move”.

The first part is mainly about why epilepsy is so important in Kenya. The film shows this with shots from various parts of Nairobi and around. For example, we see an area where the water is very dirty or somewhere full of draught. Then, we see shots of flies around the city and the ghettos where is full of rubbish. Later, there will be one or two characters who will talk about their experiences focusing on how epileptic people are seen as “demons” and being punished by their relatives and the society with the idea of “killing the devil inside”.

At the end of the first part, the Kenyan neurologist Eddie Chengo who also will be an important participant of the 1st African Epilepsy Congress, is going to give a speech about how environmental factors such as water and malaria are so important factors causing epilepsy. He will also mention about why %80 of the epileptic people don’t use anti-epileptic drugs in Kenya. His talk ends with a part where he talks about Youth on the Move just a bit.

The second part is going to focus on Youth on the Move and what they are doing. The film shows the organization as an observer from outside. It includes live recordings from yoga, theatre and cyber café shootings without explaining anything or informing the audience about what they are seeing. At the end, Karijn Aussems (Director of the program) who will present her research at the 1st African Epilepsy Congress, speaks about the organization and what Youth on the Move stands for. The film ends with a live song of Youth of the Move about epilepsy.

A current aim of the project is to use the media to spread awareness with the help of a documentary that will:

- defend against prejudice and stigmatization,
- show that it is possible to lead a normal life with epilepsy,
- encourage, motivate and support those affected and their relatives

Accordingly, the target audience includes

- the interested public,
- the scientific community,
- young people with epilepsy and
- friends and families of those affected.

The content design lies in the hands of the producers Emrah Turan (MA-Student Interdisciplinary Media Studies, University of Bielefeld) and Kristin Nahrmann (MA Linguistics, University of Bielefeld and Head of the German group “Young adults with epilepsy”). It is supported by Ingrid Coban (head of Social Therapeutical Services, Epilepsy Center Bethel, Bielefeld), the Association for Social Work in Epilepsy (Sozialarbeit bei Epilepsie e.V.) and the director Mümin Baris.

Distribution of the documentary:

- as TV-broadcasts,
- at film festivals
- as DVD’s for sponsors and
- online on a private website and on chosen platforms

We are currently still searching for interested people and sponsors to support the project!!!!
(For further information please refer to the pages attached to this document!)

Contact details:

Emrah Turan (emmojo@gmail.com, 0177-1868546)
Kristin Nahrmann (kristin.nahrmann@gmx.de, 0163- 3816499)