Nentsapho Management

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
8 th 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 5 th 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 22 nd 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