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.
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.
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
In developing countries the chances of getting epilepsy are higher. The latest research suggests that the chances of getting epilepsy in Kenya are three times higher than in developed countries. Fortunately there are ways we can reduce the number of people affected with epilepsy.Let’s take a look at how we can contribute to reducing the chance to get epilepsy
People with epilepsy have different types of seizures. One person may fall and jerk, whereas someone else may only appear absent or non-responsive for a while and stare.For some people the seizure affects only a part of the brain. This type of seizure is called a partial seizure. A generalized seizure occurs when the whole brain is affected by the seizure and one loses consciousness.Most people have only one type of seizure, but in some instances they experience several types of seizures. These include:
In generalized seizures, the whole of the brain is affected during the seizure and the person loses consciousness. These seizures mostly come without a warning sign (aura) and afterwards the person will not know what had happened during the seizure.
The cause of epilepsy can be defined as the initial reason for which someone has epilepsy. In many instances, the cause of the condition is a mystery. These are called idiopathic epilepsy. If the doctors have found the cause of the seizures, then we speak of symptomatic epilepsy. The following conditions can lead to epilepsy:
These are the most common triggers. However some people have very unique triggers, like listening to a special kind of sound or eating a certain food. Exposure to triggers increases the chances of experiencing a seizure. Being well informed about these triggers can help reduce the number of seizures. For instance, if missing a meal is a prominent trigger for one person, then they understand the importance of taking meals. In time this will reduce the number of seizures.
It’s important to understand that these triggers cannot give you epilepsy. They can only provoke a seizure if you already have epilepsy. Triggers are not the same for everyone and it can take some time to recognize them, especially if seizures are not frequent. Although trigger reduction is crucial, it is important to know that epilepsy is not caused by it. We recommend that people with epilepsy discuss the seizures with their doctor to ensure that the medical treatment offered is the right one
.Everyone who has epilepsy, or thinks that they have epilepsy, must visit a doctor for consultation. It will help the doctor if you take someone with you who was present during your seizure, as they can explain what it looked like.The doctor will ask various questions, like:
Usually a doctor can draw a conclusion about the types of seizures you experience from the answers given. If they are still not sure, they may request medical tests such as an EEG or MRI, which give definitive information about what happens in your brain.
Electroencephalogram (EEG): An EEG is a test that records the electrical activity of the brain. Special sensors (electrodes) are attached to the head and connected by wires to a computer. The computer records the brain’s electrical activity on the screen as wavy lines. The person may be asked to hyperventilate or to look at flashing lights so as to activate brain discharges. A seizure can be seen by the changes in the normal pattern of the brain’s electrical activity. Most EEGs can be run in about an hour or less.
Magnetic Resonance Imaging (MRI): To search for the cause of your seizures, the doctor may request for an MRI scan. The MRI takes pictures of the inside of your brains with the help of a magnetic field. The images are extremely precise, and may for example show a tumor or damage in the brain which could be the cause of the seizures. It may be necessary to get an injection (contrast) before the test, to help the MRI scans reveal more. Afterwards, you will be asked to lie down on a narrow bed. They will position cushioned pads on either side of your head to keep it still. It is important that you lie as still as possible during the test so as to get clear pictures without movements. The technician will roll the bed inside a shaped tube and they will give you guidance through each step. Once in the tube, you will not feel anything except for the cushioned pads around your head, but you will hear a series of knocking sounds. The duration of the scan depends on the area in the brain which the doctor wants to examine. This could take twenty minutes or longer.
It is important to get treatment to control the seizures. However, the majority of people with epilepsy in Kenya do not make use of it. Research done in Kilifi reveals that, 8 out of 10 people with epilepsy don’t take anti-epileptic drugs (Edwards,2 008). Some people deliberately avoid the treatment, whereas others unintentionally don’t take drugs. Let’s take a look at reasons why people could not be taking their drugs:
When a person gets a seizure, they can be offered support to reduce the burden of it. The type of first aid that needs to be given during seizures usually depends on the type of seizure. With convulsive seizures, the person administering the first aid needs to: