Project Description

It is estimated that in Kenya 2% of the population (over more than 1,000,000 people) has epilepsy. Therefore, the chance of getting epilepsy is three times higher in Kenya than in developed countries. 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. A major challenge of youth with epilepsy is to stand up for themselves and to avoid violence, unsafe sex and unplanned pregnancy. In Zambia 37% of people with epilepsy reported physical abuse from members of their household. This same research revealed that 20% of women with epilepsy have once experienced rape, against 3% of women without epilepsy. In the US, 30% of women with epilepsy got unplanned pregnancy before the age of 24 years, a higher rate than in the general population. These findings make it clear to us that the social empowerment of persons with epilepsy is a necessity rather than an addition to the medical care.

The youth gave us several reasons why they want to contribute in organizing activities:

  1. Very interesting in meeting other people, especially youth
  2. Wanting to improve their welfare
  3. Wanting to reactivate their social lives
  4. One of the youth said: ‘it will help me and others to grow healthy and accept ourselves for having epilepsy’.
  5. Youth on the Move involves the media throughout the year to get epilepsy positively out of the shadows. Their message to the society is:
  6. Epilepsy can happen to anyone, you don’t choose to have it
  7.  Also in epilepsy you can make it
  8. Epilepsy is not contagious, not witchcraft, not demon possession and not God’s punishment
  9. We need to be treated equally, epilepsy is not a reason to exclude us

 

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.
Changing the top-down approach to the bottom up approach

To improve the well being of persons with epilepsy, a great number of institutions at national and international levels do research, develop policies and offer health care services with the aim to reduce the burden of epilepsy. WHO states that health systems have the duty to respond to people’s needs and expectations.Despite this responsibility of health service providers, we receive complaints from people with epilepsy at the grassroots level that their ideas are not implemented. Despite this responsibility of health service providers, we receive complaints from people with epilepsy at the grassroots level that their ideas are not implemented in the service provision. On top of that, there would be misunderstanding between the service providers and persons with epilepsy. The Kenyan ministry of Health states that “service providers never really get to know what their clients understand. Thus they often assume that what they have said, advised or given has been accepted and will be done, only to be surprised later that no change has taken place in terms of behavior or practice and therefore health outcomes”.

The consequence is that 80% of Kenyans makes use of the herbalist (Daily Nation, April 2009) and only 20% of Kenyans with epilepsy take reliable Anti-Epileptic Drugs (research KEMRI, 2008).
When you go to conferences related to epilepsy, we get to hear the knowledge, experiences and opinions of doctors, researchers and policy makers. The personal views and experiences of persons with epilepsy and their ideas how to improve their lives is paid little attention to. Youth on the Move takes the responsibility to represent people of the grassroots level at the national and international policy development level, so that their personal experiences, perceptions and proposals to the stakeholders at local, national and international levels can be used to achieve the task of health systems: to indeed respond to people’s needs and expectations.
In this document you will read how we propose to take it a step farther. You will read the steps we take from the grassroots level to the international policy development level so that persons with epilepsy become designers, providers as well as receivers of the health care provision with the aim to ensure better well being for all.

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.Changing the top-down approach to the bottom up approach To improve the well-being of persons with epilepsy, a great number of institutions at national and international levels do research, develop policies and offer health care services with the aim to reduce the burden of epilepsy. WHO states that health systems have the duty to respond to people’s needs and expectations.Despite this responsibility of health service providers, we receive complaints from people with epilepsy at the grassroots level that their ideas are not implemented in the service provision.On top of that, there would be misunderstanding between the service providers and persons with epilepsy. The Kenyan ministry of Health states that “service providers never really get to know what their clients understand. Thus they often assume that what they have said, advised or given has been accepted and will be done, only to be surprised later that no change has taken place in terms of behavior or practice and therefore health outcomes”. The consequence is that 80% of Kenyans makes use of the herbalist (Daily Nation, April 2009) and only 20% of Kenyans with epilepsy take reliable Anti-Epileptic Drugs (research KEMRI, 2008). When you go to conferences related to epilepsy, we get to hear the knowledge, experiences and opinions of doctors, researchers and policy makers.

The personal views and experiences of persons with epilepsy and their ideas how to improve their lives is paid little attention to. Youth on the Move takes the responsibility to represent people of the grassroots level at the national and international policy development level, so that their personal experiences, perceptions and proposals to the stakeholders at local, national and international levels can be used to achieve the task of health systems: to indeed respond to people’s needs and expectations.In this document you will read how we propose to take it a step farther. You will read the steps we take from the grassroots level to the international policy development level so that persons with epilepsy become designers, providers as well as receivers of the health