MY JOURNEY WITH EPILEPSY by Vallent Rachel, Founder and Executive Director of Geno Epilepsy Center, Kenya

In 1990 on 23rd of January, a beautiful baby girl was born in Mission Hospital in Migori District (now Migori County). As usual the parents and relatives were very happy and grateful to God, but the mum’s joy exceeded all this.

The baby grew up to be a very jovial and healthy girl until the age of one and half years when something strange started happening to the little girl. The mum tried her best to seek medical attention from different health facilities, but it was all in vain. She received different advice from different people; some advised her to go to the local herbalist/witch doctors that they tried trying to sugar coat the name by calling them `prayer persons/men` but the mum trusted so much in her God and kept on praying for the girl and to seek medical attention.

The doctor told her that the girl was developing a brain condition because of the prolonged labor the mother had during the girl’s birth, what a shock! By this time, I was experiencing regular convulsions which were really stressing my mum.

I grew up and started going to school. I was a very social and talkative girl who could engage everyone I came across in very mature and interesting conversations. When my mum gave birth to the other three children, they were all boys and were okay, not experiencing the same condition that me as a little girl was going through. 

But I like the heart that God gave to mothers despite all these; my mum didn’t give up on her only daughter but instead became even stronger and tried to give me the best. When I was in class three, the condition became severe, and my mum was worried. She was advised by a colleague to take me to a herbalist somewhere in Migori. The herbalist gave her some herbs to boil and gave me to drink; she did so and for seven years I never had any attack, what a relief to the poor single mother!

Teenage Years’ Challenges.

When I was now in high school, I went to a boarding school far from home and in form two, the convulsions started again! It was a scary scene to my classmates, friends, and teachers. Worst of all, some of my friends started distancing themselves from me something that made me feel much pain.

My mum was called to school, and she took me to the hospital and this time round to see a specialist because I was referred by a doctor who told me it was Epilepsy, a brain condition causing the convulsions. The neurologist prescribed some drugs, and I went back to school, although this didn’t stop the condition completely, the attacks were regular and could come once after three months. This went on until I completed my high school, went to college, and completed, never giving up. 

As a young woman living with epilepsy, I have undergone a lot because of this, it took me a very long time to accept this. I couldn’t participate in some games and activities in school simply because people were cautious and afraid that i might get an attack and the other students would be blamed. I couldn’t even get to any relationship with a man and at one point I decided not to disclose this to any man approaching me for a relationship. 

Whenever I went for an interview and the interviewer got to know about this, the interviewer would find an excuse to not give me the job. After all these experiences, I have now grown into a woman and have decided to accept and view Epilepsy as a condition like any other. 

I have also decided to start a community-based organization(CBO) where I create awareness and do sensitization on epilepsy to the whole community and even Migori county at large. In my county, my organization is the only one dealing with epilepsy as a form of disability and this has made me so happy as I touch the lives of persons like me positively by caring for their health and empowering them in many ways like recently, we empowered a girl who has epilepsy with a full scholarship offered by the county as one of our partners. I have also started a monthly epilepsy clinic and as at now, persons with epilepsy within my county and other neighboring counties can access the monthly epilepsy clinic easily. Accepting the fact that I live with epilepsy  has really helped me in my day-to-day life and today whenever a man approaches me for a relationship, even before I give in, the first thing I do is to tell him of the condition. What a bold and brave step!  This has brought along many “potential” suitors, by simply being comfortable with myself and forging ahead.

My view towards alternative medication

I recall when I completed my high school an old man from a place called Loliondo in Tanzania came into the picture. This man was believed to have medication that could heal even HIV positive people. Many people including the rich and learned people in society were caught up in this wave and unfortunately most of them neglected their drugs and died.

Some people once tried to convince my mom to take her me to Loliondo but gladly my mum’s faith in God did not permit it.

How myths and misconceptions contribute to Stigma

Many people have different perceptions concerning epilepsy. Some believe it`s because of witchcraft, others think it’s because of something done wrong by the parent and that a sacrifice must be offered!  While others especially back in my community believe that it’s something transferred from one individual to another. In the sense that one with the condition can pass it on to another without, how is this even possible given it’s a brain condition that can be managed like other heath conditions? All these are but myths and misconceptions about the condition. This has led to so much stigmatization leading to high stress, depression and even deaths since so many people living with epilepsy and their parents/caregivers do not want to disclose and even seek any when they see them simply because they think epilepsy is transferable! All these are but myths and misconceptions about the condition. What matters is acceptance and once you have discovered the triggers for instance in my case it’s usually triggered by malaria, lack of enough sleep, hunger, and stress. Both positive and negative, so I try my best to avoid this.  I am always thankful to God for He has brought me forward by His faithfulness. I have been able to accomplish what all others within my age gap who don’t have the condition have accomplished. With confidence I can boldly say that epilepsy is not witchcraft, all that is needed is acceptance, medication, and control of the triggers. The kind of medication required especially in the hospital because people will talk negatively about them and even laugh at them! Some even run away from them. 

There`s also a very big gap of information between the government, health workers, education sector and persons living with epilepsy. So many people do not know that epilepsy is manageable and treatable because no one has told them, and this has led to lack of statistics on the number of people living with epilepsy. Many people living with epilepsy do not even know that epilepsy is a disability like the other forms of disabilities. That’s why, I decided to start the CBO to give people the right information and advise them on how to manage this condition.




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