Epilepsy – “The Little Dying” in Swahili – the challenge to make a ‘boring’ subject interesting.

English – October 12, 2009

Published by: Dutch Coalition on Disability and Development (DCDD) – Jeanet de Jong

Karijn Aussems, 32, is director of the NGO Youth on the Move, an organisation in Kenya that works with people with epilepsy. She left The Netherlands and moved to Kenya in 2008 and in the process she has learned that epilepsy is often seen as a boring subject; both for potential sponsors, and for people in the streets.

Karijn Aussems, 32, is director of the NGO Youth on the Move

“We are making it more interesting and we educate people. We start by listening to the personal stories, experience, behaviour and ideas and we use this in education.”

I met Karijn during the summer of 2006. She just received her Bachelor’s Degree in Community Development and was very much focused on moving to Kenya and start activities for Youth on the Move in Nairobi. The framework of the organisation and its aims were put in place, but the challenge of getting sponsorship remained. “Somehow epilepsy seems to be a boring subject, it doesn’t have the ‘sexy’ image like AIDS or empowerment of women. These subjects are given lots of attention and money. People in the Western world talk about these issues. When it comes to epilepsy this is not the case”.

When we met Karijn came across as if she was in a hurry. “I am trying to catch up time”, she says. Karijn knows what it feels like to have epilepsy; she lived with it for 22 years. It restricted her life in many ways. After a successful operation some years ago, she now lives a life without limitations due to epilepsy and is more self confident than ever before. However she clearly remembers the way she was bullied in primary school, the way she was not able to rely on her body and the uncertainty about being ‘different’. It was her personal history that motivated Karijn to start Youth on the Move. The choice to work in Kenya was made when, working as an intern, she found out that in Kenya there is hardly any information available that helps to understand what epilepsy is, what it means and how you can live with it.

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