Epilepsy Awareness & Advocacy in Zambia! - Dr. Naluca Mwendawe-Beckford, Levy Mwanawasa University Teaching Hospital, Zambia
Adult Neurologist Naluca Mwendawe-Beckford chats about her work in Zambia, focusing on the challenges of treating epilepsy in a low-resource setting. She highlights the limited access to diagnostic tools and medications, the roles of neurologists and traditional healers (and how they can work together!), and the importance of education and awareness in combating stigma. Naluca also shares her plans for an epilepsy registry and the need for policy advocacy to improve care for individuals with epilepsy in Zambia! Transcription and links to Naluca are below! 👇🏻
Reported by Torie Robinson | Edited and produced by Carrot Cruncher Media.
Podcast
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00:00 Naluca Mwendaweli Beckford
If we can have this campaign where we bring in the traditional healers, tell them about epilepsy, how to recognise it, and refer the patients early and bring them in even in the awareness campaign, I think we can work with them. It's a very good opportunity that we have.
00:17 Torie Robinson
I’ve had someone ask me if epilepsy was catching. And, someone told me that putting a metal spoon in my pocket would prevent seizures. Unfortunately, in 2025, these types of questions and beliefs are not rare occurrences - especially in Low-Middle Income Countries - and so thank goodness we have strong, passionate, knowledgeable neurologists like Naluca Beckford from Zambia! Naluca is working with local communities to educate and promote treatments and seizure prevention methods that are scientifically proven(!) and working with politicians to get them to implement the IGAP (Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders) - bit of a long one!
If you’re new and you haven’t done so already, please do like and comment on this episode and subscribe to our channel, so that we can get more people learning about and developing a factual understanding of the epilepsies!
01:12 Naluca Mwendaweli Beckford
Thank you for having me, Torie. So, I'm Naluca Mwendaweli-Beckford I'm from Lusaka, Zambia. I'm an adult neurologist and head of neurological services at my institution, the Levy Mwanawasa University Teaching Hospital. And I'm also the secretary general for the International League Against Epilepsy, Zambia chapter.
01:34 Torie Robinson
We're just 1 hour away from each other time zone-wise, which is really cool…
01:37 Naluca Mwendaweli Beckford
Yeah!
01:38 Torie Robinson
…considering the geographical distance!
So, tell us about what it can be like to have and to treat people affected by the epilepsies in your country - because I know it's quite a limited resource sort of setting in general.
01:52 Naluca Mwendaweli Beckford
When we look at Zambia, we fall in the bracket of Low to Middle-Income Countries, we're just in the central, southern part of Africa. And Zambia is actually landlocked. We are surrounded by very wonderful countries or neighbours So we don't have access to the ocean. We have our own local beaches because we have a number of water bodies: we house the mighty Victoria Falls.
02:17 Torie Robinson
Well, I have to say officially I'm a fan of that name. So, so marvelous!
02:22 Naluca Mwendaweli Beckford
With that aspect of us being in the limited resource settings, it's quite a challenge because we don't have access to the diagnostic tools and treatment options that our friends have in the High-Income Countries.
02:38 Torie Robinson
And how does this limit your treatment and care for people with an epilepsy in your country?
02:43 Naluca Mwendaweli Beckford
We have a few drugs available. Commonly, we still have some old drugs like phenobarbital, carbamazepine, and sodium valproate - these are accessible in our public health institutions. And now we are having some access to newer drugs like levetiracetam. However, this is just in the urban areas and not all urban health institutions have that, maybe just the tertiary hospitals. But in the private sector, when we look at privately owned pharmacies and institutions, they have some fewer anti-seizure medications that we don't have like topiramate, lamotrigine are available. But on a large scale we still have the old drugs: phenobarbital, valproate and carbamazepine. That's what we still use, unfortunately.
03:35 Torie Robinson
And what about access to surgeries, for instance? Is that ever seen as a treatment for people?
03:40 Naluca Mwendaweli Beckford
Unfortunately, Torie, we don't do epilepsy surgery. I'm a very positive person and I know in future we can have that. We just have to have our neurosurgeons interested.
03:56 Torie Robinson
Even just speaking to yourself and hearing about your country, I mean, if anybody's interested, I say get over to Zambia, really… and because we were talking about you, yourself being an epileptologist and there are very few in your country.
04:09 Naluca Mwendaweli Beckford
Well, at the moment there's just 1 epileptologist. I'm not yet an epileptologist, but of course, I will be going for my epilepsy fellowship in Cape Town, South Africa. So, we only have 1 epileptologist, but we do have about 17 neurologists now. So, before 2018 we only had about 3 neurologists (who were expatriates) but in 2018 we had the local neurology training program here in Lusaka, Zambia, and so we've graduated 18 neurologists. I say “we”, like I was part of the founders of the program…
04:46 Torie Robinson
Hahaha!
04:46 Naluca Mwendaweli Beckford
…but I'm very proud of it! And at Zambia Neurology we have graduated 18 neurologists and I was the 7th one! And I think people are beginning to notice and see the impact of having neurologists in the country, especially with epilepsy itself and other neurological disorders that are… some actually were thought not to exist in our region(!) but with neurologists we’re actually diagnosing these diseases like multiple sclerosis. And even with epilepsy, now that we have neurologists, in terms of advocating for better services, better anti-seizure medication, I think now we have a voice! We are not where we should be but I think we're headed towards that direction.
05:41 Torie Robinson
What is it like regarding education of the epilepsies in general in Zambia (and I mean education of people in general as well as you know members of parliament, for instance)?
05:52 Naluca Mwendaweli Beckford
We have a lot of work to do - and not just epilepsy, but brain health in general. So, with regards to epilepsy, it was in my curriculum in medical school, not a big part, unfortunately, it wasn't such a big component, but we did have some epilepsy training as part of the curriculum. I talked about not having neurologists. So, for some time, epilepsy was under the psychiatry department.
06:21 Torie Robinson
Okay.
06:22 Naluca Mwendaweli Beckford
So, we have health workers called "Clinical Officers" here. They are clinicians, but they're not like doctors. So, they're those who would specialise in general clinical officer program and those who would specialise in the Clinical Officer Psychiatry program - and those are the ones that actually had a bigger component of epilepsy training and those are the ones that took care of most of the patients with epilepsy. And even now, because… even if we have about 17 neurologists who are mostly in the urban areas, so, the rural areas still are seen by these Clinical Officer Psychiatry, so they are under mental health. Of course, it doesn't do much with fighting stigma, but for now, these are the people taking care of people with epilepsy in the rural areas in the outskirts. When they are in the big cities where there are neurologists; of course, we try to look after them. The sad part is even doctors who are not specialised (general doctors); they wouldn't really look after patients with epilepsy, they'll still refer them to the mental health department. So, in terms of fighting stigma with regards to treating people with epilepsy, as if they have mental health problems, we’re not where we want to be, but we're hoping that with the increasing number of neurologists we can get back this population. And even just encourage the medical doctors to say it's a neurological disease just like they would treat malaria, just like they'll treat HIV, hypertension; treat epilepsy!
08:09 Torie Robinson
Talking about, I guess, kind of, cultural beliefs and stuff (because this is very impactful), I hear that you have traditional healers in your country. How do they work with you (or do they) and what is the influence of them upon things like stigma and treatment for the epilepsies?
08:25 Naluca Mwendaweli Beckford
We have people… not just in the rural areas - even in the urban areas; we have people who have so much faith in the traditional healers. I think this is deep-rooted in cultural beliefs, especially with the myths that epilepsy is associated with witchcraft or demon possession. So…
08:45 Torie Robinson
Mm.
08:56 Naluca Mwendaweli Beckford
…they'd rather go to traditional healers who are thought to, you know, deal with people who are possessed or witchcraft. So, people would go there… and their trust… traditional healers are trusted people by members of the community but this should not be a disadvantage, of course, them going to traditional healers first delays the diagnosis or even the treatment, and by the time the traditional medicine fails and somebody actually comes to the modern care (the health facility), maybe the disease has progressed, they have other comorbidities or even injuries from lack of seizure control! But I think traditional healers can be “harnessed”, if I can use that word, we can collaborate and bridge this gap. I look at it as an opportunity. If we get traditional healers on board to recognise early symptoms or signs of epilepsy and refer them to the health facility in good time. Of course, it will mean they are losing their clientele(!), but we see how we work together.
09:56 Torie Robinson
Hahaha!
09:57 Naluca Mwendaweli Beckford
Yes, so I think that you know, they're gatekeepers of health services in their communities because they are so trusted by the local people. So, if we can have this campaign where we bring in the traditional healers, tell them about epilepsy, how to recognise it, and refer the patients early, and bring them in even in the awareness campaign, I think we can work with them. It's a very good opportunity that we have.
10:23 Torie Robinson (10:27.696)
It sounds very positive and you're very involved in these awareness campaigns, aren't you? Like the International Epilepsy Day or Purple Day or anything to do with ILAE YES or IBE. I get the sense there is a lot more that needs to be done day to day [on] your side and you've been involved in sort of more frequent media interviews and stuff, is that right?
10:46 Naluca Mwendaweli Beckford
Yes. Actually, the reason I decided to do neurology or become a neurologist was because of epilepsy! I was…
10:52 Torie Robinson
Oh!
10:52 Naluca Mwendaweli Beckford
…so interested in epilepsy from the time I was just a junior resident medical officer! It's a passion, I love talking about epilepsy, I love raising awareness. It's because, you know, when we look at neurological disorders, Torie, some are very progressive and there's nothing much you can do about them.
11:12 Torie Robinson
Mm.
11:12 Naluca Mwendaweli Beckford
Somebody with epilepsy has a chance of having their seizures controlled. Of course, there are those with drug resistance (about 30%), but the 70% can live a normal life with just somebody giving the correct diagnosis and the right treatment.
11:27 Torie Robinson
Mm.
11:27 Naluca Mwendaweli Beckford
So when it comes to neurological disorders epilepsy is one of those I love to talk about because the people have a fighting chance.
11:35 Torie Robinson
Yeah, and it means the families also have a fighting chance as well because it's not just about the individual with the diagnosis. And so, to end on a very positive note, tell us about your planned epilepsy registry.
11:47 Naluca Mwendaweli Beckford
Okay, so currently in Zambia, we don't have a national epilepsy registry or a robust, comprehensive surveillance program. So, I thought if we start with the registry; and I'm looking at 3 major institutions here in Lusaka (the capital city where I work at Levy Mwanawasa University Teaching Hospital), and then we have the mental hospital, Chainama - because they still have a population of people with epilepsy that they see because of the comorbid conditions, depression and all. And then, also, working with the other tertiary institutions where I trained from (where we also have neurologists available), so, these 3 areas, if I could have these 3 institutions to have a pilot of that registry, if I do it well, and then we can roll it out in the centres where the neurologists outside the capital city, if that works well, then have a countrywide registry. So, I have it figured out in that step-by-step manner.
12:51 Torie Robinson
I love the sound of it. It's taking as much control as one can. And then I suppose you're going to present this information to members of parliament to actually, you know, you'll have statistical empirical evidence for them to note and take action upon.
13:06 Naluca Mwendaweli Beckford
Yeah, that's a plan; dissemination, especially to policy-makers. So, like, for now, we have the IGAP. It's been like 3 years since WHO launched the IGAP, but we don't have… how can I put it? We have not really implemented it in Zambia. So, we're still… I could say we're still at a stagnant phase (where we were even before the IGAP), but it is promising because now, currently there's something that we're trying to work on with WHO (I won't go much into those details, but it's very promising) and I'm hoping after this project people are going to benefit from this project and learn more about epilepsy. There’s some work we've done with the Epilepsy Association of Zambia. There's a study we did; went into schools just trying to gather some data; talking to parents and caregivers and to teachers about epilepsy. We did focus group discussion involving those parents whose children are still going to school and those parents whose children are not going to school (maybe because of the diagnosis itself or the poor seizure control and they're out of school). So, we had surveys, questionnaires, asking them and also educating them that once they're on medication and their seizures are controlled, they can go to school, they have so much potential! We have examples of celebrities that have epilepsy and have made it and are thriving, even in very big, professional careers. So, it's also possible if they still allow their children to go to school. The key is to get them on medication, the right medication so that the seizures can be controlled. And of course, for those with difficult to treat epilepsy, to have them seen by specialists and see how they can be helped. And also integrating these children into the ordinary schools with other children to have this interaction. And we've also talked to teachers. So, now the IBE, that's the International Bureau for Epilepsy, they've got this teacher's guide on how to handle children with epilepsy. So, we launched this with the Epilepsy Association of Zambia, It was very successful. We gave some copies out to different primary schools so that teachers know how to recognise when a child is having seizures, what they should do when the child starts seizing in class and not just for the children with epilepsy themselves but even the friends so that they know what's going on and they should not fear - because this is where stigma comes in. Once the teacher shows fear [and] doesn't know what to do, that's what the other children get and that's where stigma starts from. So, educating the teachers and then they know what to do and also educating the other children that are just normal children like them. They are not defined by their disease.
16:11 Torie Robinson
Naluca Beckford. Her knowledge, strength, resilience, and her positive (!) persistence is, and shall continue to change the lives of those in Zambia for the better!
Learn more about Naluca and her work on the website t-or-i-e robinson.com (where you can access this podcast, the video, and the transcription of this entire episode) all in one place. And if you’re new and you haven’t done so already, please do like and comment on this episode, and subscribe to our channel so we can get way more people learning about and having a better, factual understanding of the epilepsies, around the world!
See you next week!
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Dr. Naluca Mwendaweli-Beckford is an Adult Neurologist at the Levy Mwanawasa University Teaching hospital in Lusaka, Zambia. There, she is the Head of the newly established Stroke Unit and seeks to open a specialist Epilepsy Unit.
Naluca holds a BSc in Human Biology, a Batchelors in Medicine and Surgery, a Specialist Fellowship in Internal Medicine, and a Masters in Medicine in Adult Neurology.
Naluca is the recipient of the 2024 International Federation for Clinical Neurophysiology (IFCN) Education grant with which she shall pursue a clinical epilepsy fellowship at Groote Schuur Hospital under The University of Cape Town Neuroscience Institute.
She is currently the Secretary General of the Zambia League Against Epilepsy (ZLAE) and serves as the Africa representative on the Advisory Board of the Epilepsy Consortium. In the past Naluca has been the representative for the ILAE YES Africa (2019-2023) and an ambassador the for the EAN 2024 Neurology & Brain Health.
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LinkedIn naluca-mwendaweli-beckford
Levy Mwanawasa University Teaching Hospital lmmu.ac.zm