More than 65 million people around the world are affected by epilepsy and its effects can be much more profound in underserved populations worldwide. For example, epilepsy in sub-Saharan Africa is more common than in the US and seizure disorders in Africa are associated with a high risk of early death from seizure-related injuries and status epilepticus. In addition, the epilepsy treatment gap, meaning the number of people with a chronic, active seizure disorder who are not on treatment, is 50-90+% in most African communities.
This webinar details the complex challenges to epilepsy care in sub-Saharan Africa at the community, clinician, and health facility levels. It also discusses potential interventions aimed at prevention of some common causes of epilepsy in Africa, including prenatal brain injuries, high automobile-related injuries due to poor transportation infrastructure, and cerebral malaria.
Plus, learn more about the global impact of epilepsy and how advocates combat the epilepsy health crisis in the developing world in this episode of the Seizing Life podcast.
About the Speaker
Gretchen L. Birbeck, MD is the Edward A. and Alma Vollersten Professor in Neurology, Research Director, Epilepsy Division at the University of Rochester. Dr. Birbeck has served as a physician, medical educator, and researcher in sub-Saharan Africa since 1994. Her overarching professional goal is to understand common neurological disorders in the region. She also seeks to identify modifiable risk factors for these conditions and their secondary comorbidities so that feasible, affordable, evidence-based interventions aimed at preventing or reducing neurologic injury can be evaluated and broadly implemented.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified health care professionals who are familiar with individual medical conditions and needs. CURE strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified health care professionals who are familiar with the individual’s specific health situation.
Q&A with Dr. Gretchen Birbeck
This question is about cerebral malaria. Is it more likely to cause seizures than neurocysticercosis?
Dr. Gretchen Birbeck: I don’t know that there’s been a head-to-head study. Neurocysticercosis in many ways is more heterogeneous, so people can have lesions in different places and the risk of subsequent epilepsy is probably based upon the location of the parasitic lesion. So I think it would be hard to do a head-to-head study. I think the location may matter as well, so obviously there’s limited cerebral malaria in, say, some areas of Latin America that have quite a lot of cysticercosis. We actually do have plenty of cysticercosis in Africa as well, so I think it’s probably just safe to say both are really contributing to the burden any time you get into low resource settings.
Why do you believe that stigma reduction interventions cannot be streamlined? Can you give examples of what hasn’t worked in the past?
Dr. Birbeck: So, if you examine the outcomes of the mass social marketing campaigns–not what they did but rigorous assessments evaluating whether they actually impacted stigmatizing attitudes. First of all, they weren’t terribly well studied, and when they were looked at usually the benefits were very short-lived. Those are very expensive things to do, and so they’re not really very sustainable.
My own group had looked at focused interventions in terms of epilepsy focused, epilepsy stigma reduction, but we identified power groups. So we worked very closely with people with epilepsy and came to recognize that rather than trying to decrease stigmatizing attitudes in the general population we might benefit the lives of people with epilepsy more if we targeted individual groups of people who have a big impact on the lives of people with epilepsy. We decided or determined that that would include people like teachers, clerics, healthcare workers, police officers because in areas where there’s no 911 if someone has a public seizure the police officer may be the person coming to the scene, and employers.
We did interventions with those groups and some interventions were successful, some were not. Some were even being scaled up, but again, the cost of these interventions and the cost of sustaining them really, really quite high. We’re trying to think about what could be sustainable if we could partner with other common stigmatizing conditions, the models of the stigma, the driving forces of the stigma being shared, and work with those conditions to do sort of broad interventions, I think the sustainability would be more likely. So yes, you can do focused interventions that are effective, but the question is sustainability and scalability. So to do them in one country really isn’t enough, we want to do them everywhere.
I can provide this after the talk, but we did an article, there was a whole series from the Fogarty International Center on stigma and this was published in Nature, and we really tried to make the argument about what these would look like, these sort of broader stigma reduction interventions that epilepsy could be one of the conditions that’s looked at. I do think if such interventions were sort of developed say by the World Health Organization or the World Bank and scaled up, those interventions would almost always include epilepsy amongst the conditions of interest because it is very well recognized I think even outside of the epilepsy world, that when you think about health related stigmatizing conditions, epilepsy is unfortunately the top of the pile.
On a related note, one of our audience members noted that there’s an advocate’s toolkit for making epilepsy a priority in Africa, and that can be found at epilepsyafrica.org. That’s a great resource, and it sounds like we’ve got other resources that we can gather and share with this audience.
So another question. Can you tell us a bit more about the traditional healing methods that are used and if any of these have been researched?
Dr. Birbeck: I have to say we have been very fortunate where I work in that we have developed I think a very effective partnership with our healers in the rural areas. One of the things we discovered, it was actually in the setting of the ChEAFS study, that was the febrile seizure study which was requiring a cohort, a group of children that we would follow through home visits over several months was actually three years follow up, and in trying to determine what would perhaps undermine those follow ups, it was pointed out to us that if the traditional healers in the village didn’t want children to continue to be in our study they simply would pull out or be unavailable.
That was our original motivating factor to bring in the traditional healers and speak to them about what we wanted to do and take advantage of that situation to talk to them about how they conceptualize seizure disorders and epilepsy, et cetera, and it ended up being a very positive foundational way to work with this group.
The way they described their understanding, and again, this is one region of Africa, so I cannot claim that this is generalized, most of these rural traditional healers were from the communities, they had had some life event that had led them to be chosen to be a healer or believed to be a healer, and they have a very strong bond to their community, and I would say that they have a very strong therapeutic relationship with their population. That may be very different than some of the real scoundrels that kind of come through to make a bunch of money and leave.
With that group of individuals they really viewed a seizure as a problem. They would intervene and the seizure would stop, as seizures usually do, and then some people would go on to have more seizures, so we would call those persons who now have epilepsy, and those patients they really didn’t want to take care of because they didn’t think they could help them. So what they viewed their role as was to take care of acute symptomatic seizures, which are usually brief and usually go away, so they were usually successful. Then when people developed chronic seizure disorders they really didn’t think that they could help them, and they in fact once the therapeutic door was open they became very happy to refer those patients to us.
For the group that I’ve worked with, they actually don’t believe that they’re particularly effective at taking care of epilepsy. We do see them try and many of them will tell you that trying to refer patients to help centers and hospitals are difficult because of the cost to the patients and because often they will get to a health center and find there are no drugs anyway, so they traveled all that way.
The healers take excellent case history, so I’ll often see a patient come who has localization related epilepsy with sort of focal onset in one limb. That limb will already have tattooing or scarification. The healer who has actually obtained the history, they give sometimes rather magical explanations that make sense to patients. So if a patient has sort of an aura that is a rotten egg smell they will decide that the cause of the seizures was witchcraft and that eggs were used in the magic. So there’s a lot of reasons why their explanations and their management are sort of contextually very valid to patients.
What I find most reassuring is that when I work with healers closely, most of them are very happy to refer chronic seizure disorders to us because they feel like their intervention is with the acute symptomatic seizure, which again, is usually brief, is usually going to resolve, and many of those people won’t go on to have a second seizure or at least won’t have one for some time.
There are some healers that have particular herbs that they use and we have seen situations, usually in families that already have a family member with epilepsy and they have some traditional herbal teas is the household that are being given to that individual, where somebody with an acute symptomatic seizure will receive those. That can be problematic if sort of a hot tea is orally administered to some child in the midst of a febrile seizure because then you have oral burns, aspiration pneumonia, et cetera.
So, for those sort of mismanagement, which I might say is actually the family taking a therapy for somebody else and administering it to the child without the healer’s input, we have tried to do some public education about that to decrease the oral injuries and the aspirations that we’ve occasionally seen. But in general in the rural healers in Zambia what I found is once the therapeutic door is open they will continue in the community to manage acute symptomatic seizures that aren’t epilepsy, but refer epilepsy quite happily for care to the hospital.
Along the same lines, do religious leaders can they decrease stigma and reduce that evil spirit ideology?
Dr. Birbeck: It’s interesting. We did some early work trying to look at what the drivers of stigmatizing attitudes were in different important groups of people, power entities, and you heard me say that clerics are power entities, teachers are power entities. Each of the power entities we looked at–and we looked at teachers, police officers, clerics and healthcare workers–each of those groups had different factors driving stigmatizing attitudes.
You’ve asked about clerics. The clerics’ driver was whether or not they recognized epilepsy to be a stigmatizing condition–I’m sorry, to be a biomedical condition. So for healers who recognized that epilepsy was a brain disorder, it’s like having TB or a broken leg, you need to take this to the hospital. For healers who recognize epilepsy as a brain disorder and not being bewitched and not being possessed, those healers actually had pretty good attitudes. They were not stigmatizers. It was the clerics who were unaware of the biomedical basis of epilepsy who were stigmatizing.
It would seem that the ideal intervention would be to improve their knowledge. Now, that is one of the lines of investigation and intervention we did, so we did a series of intervention programs with clerics in a large swath of Zambia, and we were able to improve knowledge. Yet we didn’t improve attitudes and we didn’t change how they were handling people with seizure disorders in their congregations.
We went back to the drawing board and spoke to them in structured interviews and in-depth interviews to understand this better, and we’d fail most because they felt like they had to respond to seizure disorders in the way that their congregation expected and not necessarily congruent with their new knowledge. So, that is a group we actually failed miserably with.
Let me give you the success stories, since we’ve been talking about stigma reduction. So we were able to improve clerics’ knowledge but we could not change their behavior. They felt compelled to behave in a certain way based on congregational expectations.
On the other hand, for teachers we found that one of the primary, actually the primary driver was teachers are educated, they knew that seizures were a biomedical disorder. Whether or not they stigmatized, and I should state they stigmatize much less than the clerics, but their stigmatizing attitudes in terms of throwing kids out of the classroom, not wanting them in the classroom, thinking that they were not capable of some of the work was really driven by whether they had any personal proximity to somebody with epilepsy. So did they have a friend or a neighbor with epilepsy? And if they did, then they were much more accepting of the condition.
So our intervention with teachers was an educational program that took place over some days in a seminar center where people were attending the seminars full time and eating communally, pre-COVID, eating communally and staying in accommodations next to each other and coming to know each other, and the instructors were people with epilepsy, the teachers found this out at the end of the intervention. So much as the intervention looked like an educational intervention, it was actually a personal proximity intervention, and that was worryingly successful in terms of not only changing teachers’ attitudes and changing what they were doing, but actually also there was a knockoff effect with other teachers in their school sort of changing attitudes over time as well based upon interactions and education from that other teacher.
So we failed miserably with clerics, I’m afraid, but we did have more luck with some groups such as teachers, healthcare workers and police officers.
There’s a couple questions along this line: What are the best ways for nonprofit organizations outside of Africa to support African organizations to narrow treatment gaps and what areas are most helpful to approach first, is it diagnostics, medication, advocacy?
Dr. Birbeck: I think here your local partners have to really inform you because it’s really the situation on the ground, and it can be very different from country to country, it can even be very different from regions within the same country. Coming in from the outside I don’t think that we can really hope to understand what that is. I think that sometimes we come in with a list of what we think people could need, and the more open we can be to really allowing the true needs to come forward from the community that’s advocating on the ground the better. Sometimes the asks, the things they may need, might seem very unusual, but if you get the full details of what they’re dealing with it’ll be clearer. So I really think in these situations local partners have to guide us because you just can’t know from the outside.
Is there a line in Western medicine that people need to be aware of? Do we need to be more accepting and understanding of the traditional healing? Can we be wrong in our Western approaches or our Big Brother mindset?
Dr. Birbeck: I think we have to at least be open to what the healers bring in. I think I’ve had a different experience than many people because of my sort of home base and work really originating in rural areas. So, I really believe in the rural areas the vast majority of healers who come they are from the community, they originate there, they live there, and they really very much view themselves as being responsible for trying to improve the health of their community. They often get very little in terms of personal income or gain, but they get a lot of status in their community. I’ve learned over time most of those people have all the best intentions, and I don’t think I’m incorrect in that.
On the other side, in the urban settings, I’ve seen plenty of charlatans coming through and they’ll whip into a city and they’ll set up a clinic, and they’ll appear from nowhere, they’ll make outlandish promises, they’ll charge huge amounts of money, and as soon as they make enough trouble for themselves they sort of disappear quietly overnight with everything that they’ve made.
I think we have to just be open-minded about who we’re dealing with. I’d be very careful about sort of painting any group of people that are claiming at least to be trying to help individuals with seizure disorders as being bad just because of sort of a label they have. I think it’s healthy to have some skepticism and to learn more. I wouldn’t recommend sort of suddenly trying to support unknown groups that are providing traditional medicines, but there’s a lot to be said for the therapeutic benefit to the family.
Let’s say somebody has their first seizure. It’s a brief, unprovoked seizure, they may well go on to develop epilepsy. This is an intensely traumatic event for anybody anywhere, first seizure, right? It means a lot to that patient that their family seeks care for them, and it doesn’t matter that that care may be garnered from the traditional healer in the community as opposed to a primary care clinic 12 miles away, that they may not even know the nurse or clinical officer there.
There’s a lot of importance in the family unit and just people’s responses to such an acute traumatic event, of just the simple care seeking process and having healers in the community makes that possible. So I think we have to be open-minded and sort of willing to learn a bit more about what an individual is actually doing, what are their motivations for being in that community before we sort of decide that they’re either all good or all bad.
Is there a difference for children or adults with the first onset seizure? Is one or the other more likely to be referred for care?
Dr. Birbeck: It depends. So we have some data sadly to suggest that females in general are less likely to be sent for care in the African setting, and I think actually sadly they’re seeing this in the Nigerian study that I cited as well. So that sort of your value in the community, your value within your family probably determines how hard or how many resources are going to be expended to get care for you. So if you are a prime age adult male you’re going to do a lot better in terms of resource seeking and the family investing in that than sort of say a young female. So yeah, it goes along power differentials. The family wealth itself obviously makes a difference, but if you control for that, less valued individuals.
This becomes problematic if you think about let’s say somebody with comorbid cerebral palsy or some comorbid condition that may be playing a role in their seizure disorder. Somebody who is disabled may be very much devalued by their community. So maybe very unlikely to have care sought for them because that requires resources that even within the family nobody wants to invest. So yeah, unfortunately there’s differential care access, even at the family level.
What can people watching this webinar do? How can they support the cause? In fact, one person was interested in learning more about how to join research efforts and even your group.
Dr. Birbeck: There are groups like CURE Epilepsy, right? I mean, there you go. There are organizations that are already partnering with local organizations in communities doing important work. I think your best bet is to identify groups whose values and approach kind of resonate with yourself, because the more what they’re doing sort of seems in line with how you feel about the condition and what the priorities should be, I think the more positive feedback that you’re going to feel in your engagement.
Then think about what you do. I mean, I see some people on the line here, and there are EEG technicians, and people with those skills who sort of volunteer. There are people who give money there, people who give support to educational activities that are ongoing to try to build local expertise. I think there’s a lot of opportunities out there if you tap into everything that groups like CURE Epilepsy and ILAE and World Federation. If you have a particular location in the world that you have some connection to you might make some inquiries and say, “What’s going on in your community for epilepsy care?” And you may be astonished to find there’s a small group there, some grassroots group trying to advocate for or do something, and then you can do something more personal.
We’ve done things for Christmas gifts just within my university, where people can gift a goat. I know that’s a thing that some of the bigger organizations do, but we’ve been able to do it on a small basis, and yet it has a big impact locally because of the revenues that then support some of our patients who are really on the most dire end of poverty and really can’t afford medicine. So I think you have to kind of look for what works for you, but I think even a brief internet search and you will find lots of opportunities to get involved. Then I would just look hard for the ones that resonate most with you so that you can have maximal enthusiasm for following through and engaging.
On this episode, former CURE Board Chair and BAND Foundation trustee Gardiner Lapham speaks with current Board Chair Stacey Pigott about the the global impact and complex challenges of epilepsy and tells us how the foundation is helping combat the epilepsy health crisis in the developing world.