On March 26th, the world marks Epilepsy Awareness day – purple day, a day fully dedicated to increase the public’s knowledge of a neurological condition affecting nearly 50 million people worldwide. Dr Eddie Chengo, an epileptologist in Malindi and assistant chairperson, National Epilepsy Coordination Committee (Necc), says 20 out of every 1,000 people in Kenya suffer from epilepsy, 80 per cent of whom live in rural areas.
With the world almost on its knees due to the COVID-19, we still want to raise awareness on this fragile disease. We want to create awareness on the plight of Kenyans suffering from epilepsy and also encourage people living with the disease that it will get better with proper medication.
So, what is epilepsy? Epilepsy, is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness. The types of seizures vary depending on the cause and type of epilepsy.
Some known causes of epilepsy include:
- brain injury
- genetics
- metabolic disorders
- immune disorders
- infection
However, sometimes no known cause can be found for epilepsy in a patient. It is important to note that epilepsy is not contagious and any age group can develop epilepsy. The good news is that it’s highly treatable.
In search for inspiration for this particular blog, I logged into Facebook in search of real life stories on epileptic patients in Kenya. And honestly, I wasn’t ready for this story. It’s actually the first emotional blog I have ever written. I can only hope it fulfills it’s purpose.
Meet Mary (not her real name) a member of a Facebook support group for epileptic patients. Thank you, Mary for allowing me to tell your story and opening my eyes to a disease that is rarely talked about. Grab a tissue guys, it’s about to get emotional.
When were you first diagnosed with epilepsy?
I was diagnosed with epilepsy in class 4 when I got my first seizure. At the time, I was in boarding school and due to frequent seizures, I had to be transferred to a day school.
How did life change in school after the diagnosis?
Going back to school after seizures was always challenging as most pupils would give me cold stares and speak in low tones while looking at me. I lost a lot of friends due to the seizures, I actually had zero to no friends. No one wanted to be associated with me, claiming they will be possessed if they did. I was constantly bullied and made fun of.
Did your neighbors and relatives treat you differently for having epilepsy?
Some of my neighbors and relatives started avoiding me and would tell me to my face that I am bewitched. They even went ahead to tell their children not to play with me when I was younger. But I am thankful for my family and some of my relatives who have always stood by me, and treated me like a normal human being.
Do you have any physical scars due to the seizures?
I have a lot of physical marks on my body due to the unplanned falls mostly on my hands and legs. I often end up biting my tongue which is quite painful. There is a time I fell and pricked my eye and now I can’t see properly.
How are your seizures?
Each seizure is different and terrifying. I fall,roll on the floor and get very violent sometimes. I once broke my bed while having an episode. Sometimes my parents tie me up and lock me up in a room as they watch me because I get violent when I get an attack.
How has having epilepsy affected your romantic relationships?
I have actually given up on love and having kids. I have dated three men in my life and all of them run away once they find out about my condition. There is this one man who broke my heart and how things ended still brings tears to my eyes. We had dated with this gentleman for almost 7 years and time had come for us to make a home. I was first very hesitant to tell him about my condition but my mother encouraged me to tell him before we could officially tie the knot. Once I told him, he outwardly told me, he couldn’t get married to a mad woman. And that’s how he left never to be seen again. After that experience, I always open up to potential suitors on the first date, and they never disappoint with their running.
Any worst experience after having a seizure?
I was once raped after an attack. A man was passing by our home when i had a seizure and since no one was around he dragged me to a nearby bush and raped me. Luckily for me, my brother caught him and we took legal action against him.
Have you faced any challenge in getting access to the needed medication?
Yes, there are times when I have had to go without medication due to their unavailability in public hospitals and I can’t afford buying them from a private clinic. You know we depend on the drugs. If I miss my drugs, the number of seizures and the sequence increase.
What is your biggest fear?
The fear that one day an attack might result in my death and they will be no one around to help.
What do you want to say to patients who have the same condition?
Never lose hope, the condition is treatable. Take your drugs and join a support group, it gets better with time.
This interview just comes to prove that there is still a lot of stigma and myths surrounding the disorder. Kenyans should stop stigmatizing epileptic patients as they are normal human beings, just different in their own beautiful way.
The lack of a proper policy, poor drug compliance and treatment gaps due to low resources have also negatively affected the fight against epilepsy. The government should step in and make it easier for patients to get access to medication.
Share this blog and let’s all wear purple in raising awareness on Epilepsy. #EpilepsyAwarenessDay
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