Epigraph Vol. 24 Issue 1, Winter 2022
Knowledge is power: Increasing epilepsy awareness in Zambia
Reported and produced by Nancy Volkers, ILAE communications officer
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Podcast Transcript: Knowledge is power
Bright Mulenga Bwalya: We have very few neurologists in the country, and so most of them are hit with this dilemma: should I get to know my patients personally so I can understand their condition and give them the best care I can give them, or should I work in such a way so that I meet the goal of seeing everyone who is outside my office?
Eighty percent of people with epilepsy live in low- and middle-income countries. And only about one in four of them receives treatment. Across diverse cultures and systems of health care, barriers to epilepsy diagnosis and treatment are often similar: a lack of understanding about epilepsy, limited access to medicines, and a shortage of medical personnel.
This episode highlights the journey and the efforts of one young man making a difference in epilepsy care in Zambia. Here he is.
Bright: Bright Mulenga Bwalya – three names, it’s quite common here to have three names. I live in Lusaka, Zambia. I’m a software engineer, a poet, a basketball player, somebody who loves cooking – I’m really intrigued by food art.
I was diagnosed with epilepsy in March 2016. It didn’t happen overnight, of course. I was at a church seminar, and we were having lunch and it became too hot. I was tempted to take some water, and all of a sudden, I blink, and people are asking me, “Are you okay?” and everybody’s panicking. In my head, I just blinked but to them I fell, dropped the water, the whole thing. And they explained what happened.
Sometime later, Bright had another seizure at a dinner with friends.
Bright: Again, same thing happened – in my head I just blinked, and next thing, “Are you okay? Are you okay?” and people were panicking. One of my friends decided to call a doctor friend of ours, to whom he explained what had happened and this gentleman suggested I go to the hospital immediately the following day.
So I went to the hospital, not even knowing what I was going to say to the doctor. I was trying to explain to him what had happened – I was seated with a friend, I had a bottle of water, and before I could even finish the statement, I blink, and the doctor is like “Oh, is that what you meant?” And I asked if I just had a seizure and he said yes, you just had a seizure.
Without much explanation, he wrote a prescription for carbamazepine, and I was sent to the pharmacy. I was curious – I’m a very curious person – and I wanted to find out what exactly was this thing that was happening to me. No doctor explained anything, they would just write prescriptions and telling me “Go, and when it finishes, come back” and I come back and they write another.
So I set up video recording on my computer. I get auras prior to a seizure so I knew when I feel that way, a seizure would happen. I was seated in my room, I got an aura, set up my computer for the video, started recording and sat on the bed. I had my seizure, the video was there, I watched it, then went to YouTube and watched other videos of people doing what I was doing – hands shaking, head moving around, finally falling down and all of that.
Bright is studying information technology and his experience leads him to change his educational goals to help people with epilepsy. He also discovers that most of his professors don’t believe he has epilepsy.
Bright: Instead of me focusing so much on research about my health and then I have other research to do for my dissertation, I decided to merge the two. I told my supervisor I wanted to build an application to help people living with epilepsy. So I started working on Seizure Assistant. He gave me a weird look because this is not something that people had done. And I told him that it was because I thought I had epilepsy, though the doctors hadn’t told me that explicitly.
This came with a challenge because I started experiencing a lot of seizures – as many as five per day. I couldn’t go to all of my classes that I needed to, when I needed to, because some would clash with my times with doctors. I’d leave that place, it’s late, I’m tired and scared of having a seizure in public so I’d go straight to my apartment and rest. Explaining this to my lecturer and my supervisor was hard – making him understand what I had was difficult because up to now, people are not open about their epilepsy. So when you explain what you have, the man looks at me and says, “You’re coming up with excuses for not coming to class.”
I got reports from the hospital, signed by doctors, my prescriptions—“My documentation is here, sir – I go to the hospital because of this condition.” And he still couldn’t buy the story, and so he decided I was not going to present my final year project. My friends presented, five years in school, graduated, but I was pushed back and told “because you have been lazy, you’re not going to present your project.”
It was a bit of a blow. Very disheartening. It caused me to have some self-introspection – what is wrong with me? Why is it that anything I say to this man, he is not believing me?
More than a year later, Bright presents his final project to glowing reviews. Some reviewers want to award him an A+, but his institution does not accept grades that high. In addition to his educational challenges, Bright’s relationship ends and his former love of reciting poetry on stage is now overshadowed by fear.
Bright: I was no longer that person who was standing on stages reciting poetry, and I could no longer stand on stage because I was afraid – what if I’m on stage and I have a seizure? That’s going to be quite strange for the people watching, and even scary, because I’ve had a seizure and had people run away.
Bright also faces a serious challenge from within his own family.
Bright: Everybody believed I was demon possessed and they argued with me about it every day and stopped me from buying medication because some pastor, somewhere, said “He’s not supposed to be on medication, it’s a sign of faith.”
To get the treatment he needed, Bright moved out. He gave his family information about epilepsy and asked them to read it.
Bright: And they got back to me, and they understand now that it’s a condition that many people have, and they appreciate the stance I’ve taken. I talk to people every day who are going through a lot of trouble because they misunderstand what epilepsy is here in Zambia, and they’re facing problems with their families just like I did.
Misconceptions about what causes epilepsy are not limited to Zambia and they’re not new. But Zambia faces an additional challenge because historically, psychiatrists have cared for people with epilepsy, due to a lack of neurologists. Before 2018, when the country’s first post-graduate neurology training program began, the few neurologists in the country were non-native physicians mostly focused on research.
Dr. Naluca Mwendaweli: For a long time in our country, we’ve had the psychiatrists looking after epilepsy patients, and unfortunately, that’s contributed to the misconception that it’s a mental illness.
Dr. Naluca Mwendaweli is a neurology resident at UTH in Lusaka – the home of Zambia’s training program.
Dr. Mwendaweli: As much as we are looking at the health system, we also need to educate the public on epilepsy, and this is something we’ve been doing with the ILAE Zambia chapter in collaboration with the Epilepsy Association of Zambia.
On International Epilepsy Day, or our national epilepsy day, or Purple Day, we go into schools and give talks on epilepsy. We invite parents as well, we invite the teachers, and we have a discussion because we still have children who are going to general schools and they’re facing challenges of being isolated.
Also, the teachers don’t know what to do when a student has a seizure. So we try and educate them on what to do, and if the parents are there, we give them as much information as they can absorb to help them through the whole process of having a child with epilepsy.
Bright’s advocacy efforts started after he moved to Lusaka and began attending epilepsy clinics at the university teaching hospital.
Bright: I went there to see a doctor to have my prescription renewed. While seated there, I saw others with epilepsy and in that room, there was total silence. Not even one person would cough with confidence or even cough at all – when they did, they would look up as if they may have disturbed someone else. And I thought, this is really not good. Why are people seated this way – why are they feeling so sad about themselves?
And so I thought, let me try to talk to these people before they saw the doctors. I spoke to the nurses there – the nurses had been helping me a lot, because I would often have a seizure right there in the waiting room. It was quite crowded and hot, with not a lot of air flowing through, so I would often have a seizure, so I got to know the nurses there. I asked one of them, the lead nurse, if I could talk to people just 30 minutes before they see a doctor. She agreed.
So in my intro, I made sure to tell people about everything else I was doing in my life that was really amazing, and bring in the epilepsy last.
Which might have sounded something like this:
Bright: “Hey guys, I’m Bright. I’m a software developer working for this company and we’re working on this software, and that software, and I’m a poet, I love this and that and oh, by the way, I’m epileptic.”
And you should have seen the shock on people’s faces after they hear all of these things I’m doing and all of that, and then they hear I’m epileptic and they’re like, “Wait!” Even the people who weren’t really listening were turning their heads. And I knew that was the thing they needed to hear. Because most of them believed once you have epilepsy, it’s done. You’re not going to be able to do anything, your career is done, zero: The only thing that exists about you is your epilepsy.
I started talking to them about various ways they can manage their condition. How they can study their epilepsy, know which kind it is, know what triggers their seizures so they can avoid them or get ready for them. They were not very informed. I met a person who had lived with epilepsy for 16 years and they did not know what kind of seizures they experienced or what triggers their seizures.
This gave me a boost, to do this advocacy. I met a friend who saw what I was doing, and she invited me to radio. She said let’s go to radio and hold some sessions there, talk to people. We were answering questions and educating people about epilepsy. Some of the questions were shocking. We had a couple call in from Kabwe and the man was afraid to give his name, and his question was, “Is epilepsy sexually transmitted?” And I’m like okay, wow. This is the extent to which people don’t know about epilepsy.
In 2021, Bright was the recipient of a Golden Light Award from the International Bureau for Epilepsy. The awards recognize those who have helped bring epilepsy out of the shadows and into the light.
Bright: Through the advocacy work, in person, on radio, was even invited on TV—it was an eye opener for what I am able to do as a person on my own, to help the community.
Bright is making a difference across the community, including at the UTH neurology program, headed by Dr. Deanna Saylor.
Dr. Deanna Saylor: Congratulations to Bright – we so appreciate his advocacy and dedication to epilepsy awareness and improving care. Before COVID, he routinely came to our clinic – patients wait in this big general waiting room, often for hours, to see us – and he would show up every clinic day and provide education to everyone in that room.
What would you tell your younger self, if you could go back to March of 2016. Do you have any words of wisdom for him?
Bright: I guess I would encourage him not to pull back from the major audience he already had, but rather use that to teach people about epilepsy.
When I was leading these arts groups, I was on the stage speaking to heaven knows how many people at the university. I was the guy who was called to share a poem. So I would tell him before you share that poem, talk to people about epilepsy and tell them you are somebody who has epilepsy and yet you are still able to do these things that people bow at and say, “You are amazing – how are you able to remember a 10-minute poem?”
Tell them you’re that person who has epilepsy but having it doesn’t make you different from them – you can still do all the things that other people can do. All those amazing gifts that you have – you can still utilize them.
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