Making of an Advocate 

My story is about an individual whose childhood experience with epilepsy stigma led to her to founding an organisation that demystifies epilepsy so that other children don’t go through the horrible experiences she went through in school.

 

Nina was born a seemingly normal baby like any other. She was quite pleasant to have around and she steadily developed with a good appetite for beans. Her nanny who spent hours with her made her start mimicking songs that played over radio waves at a very tender age. Often, her Dad would be heard cautioning her siblings not to make her laugh because she would fall ill. Excitement was later identified to be the trigger for her seizures.

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This amazing child started talking before she could walk, which was rather unusual but quite intriguing to her family members. Nina went into infant school before she was three years old. She loved drawing and writing out well the work her teacher gave her. The first days of school went on well. During the second week, when her Dad went pick her from school, he faced a scared teacher who told him Nina was in the sick bay. He didn’t wait for further explanation but sped off to find his little girl motionless, her skin had turned blue. He grabbed her limp body and sped off, closely missed by a speeding car. That was the start if Nina’s journey into the then unknown disease.

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At six years of age Nina was diagnosed with epilepsy. This, however, did not deter her interest in schooling but she started detesting her return there after weekends at home. From Primary school all the way through secondary school and university Nina faced rejection because of having seizures. She explains, “The unfortunate thing is that during an episode of a seizure, you never know what is going on, you are not in control,” she says. Nina adds that “when other children were running and jumping over desks, I also tried to run. There was this deep feeling of fear and after that I would not understand what follows...”. She adds, “much later as I came around, I would find my mouth bruised, my jaw hurting, filth all over my body and hardly knowing where I was.”.Slowly, I struggle to get up and try to make sense of where I am. I am scared because I am all alone in the massive playground. I trudge on to the dormitory where the dorm-mother calls:

“Mago! Where have you been all the time? All your friends have finished bathing, you are late for dinner. Hurry up!”

She said, walking off in the opposite direction. When she finally gets to the dining hall, she slowly makes it to get her bowl of food, not so sure she will eat it anyway since her mouth was sore. She goes to sit next to her dorm mates and they all move away, leaving her alone on the bench. Nina found it strange but this became the practice in school. Nobody wanted to relate with her, share sitting area in class and she became a loner in a crowd. School became very miserable for her. She would sit at the edge of the play area and watch other children play and share pleasantries. It was a lonely time.

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Seizures are the openly visible signs of epilepsy. A person in a seizure should get support from those around because epilepsy is not contagious. In class, she stopped putting up her hand because the teacher would never pick her to answer questions. She was very frustrated but always positively looking forward to the weekend which she regularly spent at home with her family.
In spite of all this happening, Nina made it through the ranks, until she completed both primary and secondary school. From time to time there would be a health presentation by a specialist on various health conditions: Cancer, Heart disease, HIV/AIDs and other conditions and where and how one could get help. Nina always wondered why nobody came up to talk about epilepsy. There are many myths and misconceptions surrounding the condition of epilepsy, while many still believe it’s a spiritual affliction. By the time Nina completed university her seizures were controlled by anti-seizure medications. Never the less she still felt that emptiness, loniness and embarked on finding an organization or an individual with whom she could share her epilepsy experiences but she found none. After her formal school, where she got a degree in Ethics and development, she decided to found an organisation to fight stigma and discrimination from communities, especially schools. She says, “No school going child with epilepsy should go through what I suffered due to lack of knowledge about epilepsy, school is supposed to be an enjoyable experience”, she says

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From 2018 Nina embarked on a journey of creating epilepsy awareness especially in schools. With main objectives. Fight stigma and discrimination towards people living with epilepsy, to change mind-set of individuals towards people living with epilepsy. Increase
To be a role model for children living with epilepsy. Advocate for policy change or enforcement to enable children with epilepsy and other neurological conditions attain education. Nina says, “Children with brain conditions should be encouraged to live an independent life because in the absence of their caregivers they cannot survive”, Nina with her organisation of Purple Bench Initiative based in Kyanamukaaka, Masaka District has reached 24 learner institutions including Primary schools; Secondary schools, and tertiary institutions. The organisation has got and online support and has a virtual group for caregivers, and one for the youth. In Kyanamukaaka through awareness and esteem-building, PBI has supported formation of a membership group composed of 19 persons with epilepsy and caregivers who meet once a month to share experiences and ideas about their unmet nonmedical social needs.

Nina with her team participates in radio and TV health shows and create awareness, and encourage participation of persons with epilepsy in decision-making in issues that affect their life at various levels of society.

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What I learn from this story is that when epilepsy is demystified, there will be more positivity towards persons living with epilepsy especially children with this condition. They can then enjoy their learning experience in school and grow up to be independent productive adults.

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