INTRODUCTION
‘Epilepsy’
many of us have heard of this word but not surprisingly, many don’t quite understand the meaning or the condition that comes with the word.
‘Kifafa’,
now here is a term that almost all of us know and have heard about in one or the other way; maybe from a Swahili class, a hospital maybe or even family or friends. The term epilepsy/kifafa refers to;
A chronic condition i
n which an individual has recurrent seizures or convulsions which are caused by a temporary disturbance in the brain activity which manifests itself in different ways leading to different types of epilepsy
A convulsion or seizure is a sudden, violent, irregular movement of the body, caused by involuntary contraction of muscles and associated especially with brain disorders such as
- Epilepsy,
- Presence of certain toxins
- Other agents in the blood
- Fever in children. It is estimated that almost one million Kenyans suffer from epilepsy, most of who are below 25 years of age. What are the types of seizures?
Absence seizures
Atonic seizures
Atypical absence seizures
Clonic seizures
Epileptic or infantile spasms
Febrile seizures
Focal bilateral tonic clonic seizures(secondarily generalized seizures)
Focal onset aware seizures(simple partial seizures)
Focal onset impaired awareness seizures(complex partial seizures)
Gelastic and dacrystic seizures
Myoclonic seizures
Refractory seizures
Who can get epilepsy? Epilepsy can start at any age in life and can affect anybody. Some people have fits once or twice a year while others have several fits in a month or week. The attitude people have towards epilepsy makes it difficult to manage it like other medical conditions. This is because they tend to;
Associate epilepsy with witchcraft
Hide their sick relatives and friends
Believe that epilepsy is contagious
Associate epilepsy with curses from their ancestors. NB; epilepsy is not contagious and management of epilepsy requires support from individual families and the community. This support is only possible when people change their attitude towards epilepsy. Causes of epilepsy;
Causes of epilepsy are many, but some of the most common are;
• Injuries to the head, as may occur during road accidents, fights or birth.
• Prolonged lack of oxygen as may occur during long difficult labor and birth.
• Diseases that may cause brain damage, like chronic meningitis, cerebral malaria and measles.
• Diseases/infections during pregnancy that may cause damage to the developing baby’s brain.
• A foreign growth in the brain e. g brain tumor.
• Drugs like alcohol, bhang, cocaine, poisons like lead, mercury (substance abuse). NB; some forms of epilepsy have not been attributed to any cause. How can epilepsy be controlled? EPILEPSY IS A TREATABLE CONDITION
The aim of the treatment is to prevent seizures. This can be done by taking the right medicine at the right time. In most people the seizures are completely controlled while in others the frequency of their occurrence is markedly reduced. First aid during a seizure
In the event of a generalized seizure the following information is important in managing the fit;
o Do not panic be calm. o Do not run away. It is not contagious. o Remove the patient from any danger such as fire, water, machinery or traffic. o Take away harmful objects near the patient. o Put something soft under the head e. g a cushion to avoid banging the head on the ground. o Remove glasses and loosen the clothing around the neck and waist to help the person breathe easier. o After jerking stops, turn patient on his/her side so that saliva can easily drop from mouth. o Stay with the patient until he/she recovers. WARNING!
DO NOT put or try to put something between the teeth. Not everyone bites their tongue and if they do, it will happen at the onset of the seizures.
DO NOT stop the jerking movement, as this can cause the patient an injury.
DO NOT give anything to eat or drink immediately after a seizure. They can easily choke. DON'T GIVE IN TO STIGMA; A DIAGNOSIS DOESN'T DETERMINE WHO YOU ARE OR WHAT YOU CAN DO. MY STORY
As we have already seen, epilepsy can start at any age in one’s life. My experience with epilepsy started at a tender age, about 2 years old. At this point the attacks were very mild and considering the fact that we were not very informed about epilepsy, it took us longer to respond to the condition. I was first taken to Tigania Mission Hospital where the doctors administered medication for a while without any success. This caused them to refer me to Meru level 5 general Hospital. Here, I was diagnosed with PETITE MAL SEIZURES and medicine was administered. I was advised to take the medicine for three consecutive years so as to control the attacks as early as possible. This became a challenge as every time the attacks would reduce, my elders would advise my mother to quit administering the medication as they did not find any reason to keep on taking medication while I seemed healthy. Unfortunately, every time they quite administering the medicine, the attacks would arise again and I would be rushed to hospital, only for the doctor to give the same advice. Not long after all this transpired, my parents decided to come seek a different opinion in a better facility here in Nairobi. Surprisingly, on arriving in Nairobi the condition became dormant and the attacks stopped. This caused quite a lot of confusion and as a result no medical attention was sought after and the condition was forgotten. The condition lay dormant for about 13 years till it was triggered by an incident in high school. Our dormitory caught fire in the middle of the night while all students were asleep. When the fire was discovered we were forced to hurry out in panic. In the midst of all the chaos and confusion, I had a seizure attack. After regaining consciousness, I tried telling those in charge that what had happened was not normal but I was dismissed and the incident was once again forgotten. It was not until 2019 that the condition awoke fully reenergized. On March 2019, I had a serious seizure that forced my parents to rush me to the St. Francis Community Hospital Kasarani where I was for the first time taken to an emergency room so as to be stabilized. After regaining consciousness, I was at first given mild medication and a brain CT scan was performed to check if everything was alright. I was discharged later in the day since the doctors were not aware of my history and we could not associate the childhood incidents to this. A few weeks later, on the month of April, I had another attack that caused two of my teeth to break from the impact of falling down. I was rushed to the same hospital where after medication I stabilized and the doctors decided to refer me to a consultant neurosurgeon at the Kenyatta Hospital private wing. The experience at Kenyatta Hospital was at first good as it is where we first started learning about epilepsy and what it entailed. Here, I was given medication and assured that it would work with time, and I was informed that I would take the medication for three years. I kept on taking the medication this time as advised. The condition seemed to have been suppressed for almost two months but on the 8th of June, all hell broke loose when I had three consecutive attacks all on the same day. This forced the doctor to take drastic action and I was admitted at Meridian Equator Hospital. This was the most serious attack I ever had at the time so I was immediately put under heavy medication and quite a long treatment process so as to try and determine what the issue really was. As a result, the cost implications were very high and this started causing a financial strain to my family. Due to the high costs, I was discharged ten days later after being diagnosed with a convulsion disorder. From then on, I was constantly on very high dosage medication and frequent hospital appointments. The frequent appointments and expensive medicine were really causing a huge financial depression at home and this started causing a lot of financial troubles at home. This became an issue especially after noticing that despite the treatment being offered, the attacks kept on happening every once in a while. Not long, the side effects of the drugs I was taking started kicking in. in 2020, I found myself getting depressed especially during the Covid-19 lockdown period. Furthermore, I had noticed that most people started avoiding me after finding out my condition. This made it hard to make friends and in turn forced me to become an introvert. About a year later, on the 5th of October 2020, I was met by a rather unexpected surprise. I had a convulsion that forced me to get admitted at the Coptic Hospital. The convulsion was followed by some severe injuries to the head after falling down and getting hit more than once. I was monitored for the next few days after which I was discharged. Here, I was diagnosed with seizure disorder with acute attacks. After this attack, the frequency of attacks increased and so did the side effects of the medication I was taking. I started getting a lot of suicidal thoughts and my anger started becoming unmanageable. This forced us to seek a second opinion. In seeking a second opinion, we travelled all the way to Tenwek Mission Hospital. Here, we were not able to get much assistance with the problem, but we came to learn that there was a difference between a consultant neurosurgeon and a neurologist. This in turn started raising a lot of questions. In 2022, the side effects of the medicines had become too much and were really affecting my day to day activities. It was not long after the first two attacks of the year that I found out about the Kenya Association for the Welfare of People with Epilepsy (KAWE). Sadly, I had lost an uncle to epilepsy after he had simultaneous seizures which caused him to have a heart attack. It was during his burial preparations that one of his friends and a neighbor found out that I was also suffering from epilepsy. He decided to share his own experience with me and directed me to one of the KAWE clinics near my home area. We decided to seek one of their specialist’s opinions and on the 22nd of APRIL 2022 we went to the Huruma clinic. It was much cheaper than all the hospitals we had been to and the doctors there really took time with their patients, especially new patients. They followed up on my history since birth and about one hour later, I was diagnosed with idiopathic generalized tonic clonic seizures. The medicines I used to take were immediately changed as all of them were not suited for my condition and furthermore, the dosage I had been given was an overdose. This ended up contributing to the trouble that already existed. The new prescription by KAWE has currently been very friendly to the body, mind and to the pocket too. The current medicines are very effective and affordable unlike the others, you can easily get them at the KAWE chemist at a subsidized price. The doctors are very friendly and follow up on their patients’ history before choosing a suitable approach to their problems. I am currently under their instructions and I can say that they have changed my life for the better.
……that is but one journey of epilepsy. You too can share your story with us or that of a friend or loved one. You can help us help you or a friend or loved one by sharing their details to our page. How you can help
Spreading epilepsy awareness. Printing of educational materials. Directing patients to our page for further help. Contacting us through our number- +254715739569
Epilepsy is treatable kifafa ina tiba
