CURE Epilepsy celebrates our 25th anniversary as the leading nonprofit dedicated to finding a cure for epilepsy through research with a public service announcement (PSA)set to air onESPN this summer during The Basketball Tournament.
The PSA features photos and video footage of fifteen people living with epilepsy or who have tragically lost their lives to the disorder. The intent of the thirty-second ad is to highlight the heterogeneity of epilepsy, inspire urgency to advance science, and raise awareness of CURE Epilepsy by showing real people impacted by this common neurological disorder.
Watch the PSA live during an upcoming basketball game. The PSA will air during the following games:
Thursday 7/20, 7PM EST, ESPN2
Thursday 7/20, 9PM EST, ESPN2
Friday 7/21, 7PM EST, ESPN2
Friday 7/21, 9PM EST, ESPN2
Sunday 7/23, 3PM EST, ESPNU
Sunday 7/23, 5PM EST, ESPNU
Monday 7/24, 7PM EST, ESPNU
Monday 7/24, 9PM EST, ESPNU
Saturday 7/29, 12PM EST, ESPNU
Monday 7/31, 7PM EST, ESPN2
Monday 7/31, 9PM EST, ESPN2
Wednesday 8/2, 7PM EST, ESPN
Please check out the video and share it on social media to help us raise awareness of epilepsy (feel free to use our suggested copy below):
So excited about CURE Epilepsy’s PSA to help raise #EpilepsyAwareness and show the need for #EpilepsyResearch! This PSA is going to be running during The Basketball Tournament on various ESPN properties. Watch the PSA and learn more about @CUREEpilepsy here: www.youtube.com/watch?v=JZVzLxLVIhY
When a child has epilepsy, it affects the entire family–including the child’s siblings. This Siblings Day, CURE Epilepsy honors the sisters and brothers of people with epilepsy and spotlights their experiences and their needs. Celebrate Siblings Day by hearing personal accounts from siblings of individuals with epilepsy in two Seizing Life® episodes or dive into the impact of seizures on the entire family in our recorded webinar.
Hannah recounts her brother’s treatment journey and shares the heartbreak of losing her brother, Dylan, to SUDEP at a time when he was thriving. Hannah also explains how her brother’s experience, attitude, and determination inspired her to get involved in the epilepsy community through several non-profit organizations including joining CURE Epilepsy’s Board of Directors. Hannah shares her hopes for the future of epilepsy research and discusses the importance of community and the need to remove the stigma around epilepsy.
What is it like when your sibling has epilepsy? It can be late-night runs to the hospital, sharing parental attention in a whole new way, or constant concern about when the next seizure may come. Hear from Board Members Marilynn Gardner and Michael Axelrod in our Seizing Life episode Growing Pains: Living with a Sibling with Epilepsy.
CURE Epilepsy is calling all caregivers to and loved ones of an American with epilepsy this Valentine’s Day to help spread epilepsy awareness! Take a picture of yourself with a purple heart with a caption that says “Someone I love is 1 in 26” to raise the awareness that 1 in 26 Americans will develop epilepsy in their lifetime. Create your own heart, print out a purple heart, or print out one of the hearts below to color yourself! Don’t forget to tag us on your posts!
Purple Day® programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to direct epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and supports available to them.
Planning is still in the works, but you can expect:
• Comprehensive Epilepsy Expo
• Epilepsy education, resources, and advocacy materials
• Meet and Greet with Purple Day® founder Cassidy Megan
• Fun Activities
• Giveaway’s
• Free Swag Bag
• Character Photo Opportunities.
• Fun Group Photo
• Light refreshments will be served
Stay tuned for more information about CURE Epilepsy’s participation in this year’s Fourth Annual Purple Day® For Epilepsy Awareness Around The World and Expo which is held on March 25th here, and you can learn more about Purple Day® here.
November is Epilepsy Awareness Month, a time when the epilepsy community comes together to raise awareness about how common epilepsy is, unite in battling the stigma too often faced by those with epilepsy, and reinforce the importance of funding research to find a cure. In celebration of this month, CURE Epilepsy is launching the Say the Word #SayEpilepsy campaign. The goal of this campaign is to get people to talk about epilepsy.
Studies show that people with epilepsy are more sedentary than the general population. This is partly due to concerns about having a seizure while playing sports or exercising and the fact that healthcare professionals previously advised against physical activity. Many people with epilepsy, caregivers, and even some doctors are unaware of the research surrounding physical activity for those living with epilepsy. Unfortunately, studies have shown that up to 80% of people with epilepsy exhibit some form of cardiovascular disease 1 , and people with epilepsy have a threefold increased risk of sudden cardiac death 2. These statistics suggest the need for more physical activity among those with epilepsy, a fact that is reinforced by recent research.
This free webinar will explain the difference between exercise and physical activity, summarize the health issues faced by manypeople with epilepsy and discuss who may benefit from physical activity. Viewers will also hear the current consensus among medical professionals on the safety of different types of physical activity and exercise for people with epilepsy. Finally, viewers will learn practical tips for how to safely engage in physical activity for those living with epilepsy.
The webinar is intended for people living with epilepsy, their family members and caregivers, and anyone seeking to learn more about mental health and epilepsy.
1 Verrier RL, Pang TD, Nearing BD, Schachter SC. Epileptic heart: A clinical syndromic approach. 2021;62(8):1780-1789
2 Bardai A, Blom MT, van Noord C, Verhamme KM, Sturkenboom MC, Tan HL. Sudden cardiac death is associated both with epilepsy and with use of antiepileptic medications. 2015;101(1):17-22.
About the Speaker:
Dr. Halley Briglia Alexander is an Assistant Professor of Neurology at Wake Forest School of Medicine. She is board certified in the areas of epilepsy and clinical neurophysiology. Her research focuses on evaluating the effects of physical activity in people with epilepsy on seizure control and epilepsy-associated comorbidities. Dr. Alexander is working to develop physical activity programs that are accessible to those with epilepsy, taking into account the unique barriers to exercise that people with epilepsy may face.
Q&A with Dr. Halley Briglia Alexander
One of the most challenging obstacles to getting enough exercise and activity is the feeling of constantly being fatigued and a sense of being sedated from the antiseizure medications. Is there anything that can be done to address this issue?
One reason why we think that physical activity could be good for people with epilepsy is because of these medication side effects. And there’s been at least one study that I can think of off the top of my head that showed that people reported a reduction in their medication side effects after they started exercising. So my recommendation would be to try not to let it keep you from starting the physical activity. That’s a lot easier said than done. But I think if you can make yourself just start somewhere, like I said, a few minutes a day, you should find that increasing your physical activity, even though it’s going to be hard at first because of those side effects, will probably reduce the side effects that you’re experiencing. And then, therefore, it will kind of just get easier day after day.
The other thing that I’ll say is that it could be worth talking to your neurologist about your medications, because we don’t want anyone to have to live with side effects. And we have over 25 medications for epilepsy now. So, it’s possible that they may be willing to work with you to try adjusting medications and finding a regimen where maybe you don’t feel so fatigued.
Another question came in that relates to a very tragic event that happened very recently with regard to a surfer. This is a surfer who died potentially from seizure while surfing, and this is a very scary possibility.
The person who posed the question also enjoys surfing and has epilepsy. And generally, they feel better physically after surfing and believes that the additional ATP produced in the body might help with brain health. So, I want to get a perspective on that. What are the thoughts on ATP production from exercise? Will it help reduce seizures at all? Are there other things that the body produces during exercise that might help reduce the chances of seizures?
That’s a great question. And that’s all kind of research that we don’t have answers to right now, but they are being looked at. We do have data outside of epilepsy and some from other neurological diseases even, especially in the Alzheimer’s realm, where they’ve looked at what is actually changing in the body when people exercise and how might that be benefiting brain health. So, there are some neurotransmitters that they’ve looked at. Something that comes up a lot is BDNF, which is brain-derived neurotrophic factor, which is thought to increase plasticity of the brain, so kind of improving the health of neurons. But specifically in epilepsy, it really hasn’t been looked at. So, there’s many theories about what could be happening in the brain, different levels of different hormones, and again, neurotransmitters. And it’s probably some combination of all of those things that’s happening, but we don’t have all the answers to that right now.
Here’s a question about weightlifting, which was included in the moderate risk category, but the CDC recommends including strength training two times per week. Can you clarify or share your opinion on this?
Another good point. So, it is definitely recommended to do some weight resistance-type exercise. But of course, that is slightly increased risk in people with epilepsy because of the fact that if you’re lifting a 30-pound weight, or lifting it over your head, if you are to have a seizure, there’s a more significant risk of injury there compared to just walking or running.
And so, as far as I know, there aren’t any official guidelines or recommendations about that. But one thing that I think would be safer if you want to incorporate resistance training and you’re having frequent seizures is possibly using resistance bands, because you can get the same idea, same kind of effect on the muscles as weight lifting, but it’s a little bit safer in that you’re not lifting a weight that could drop, you’re just working with the resistance of the band.
I’m not a personal trainer, so I can’t suggest any specific exercises with the bands. And of course, I don’t know the context of this person’s specific epilepsy, but that might be somewhere to start.
So, should someone try to target a specific level of exertion or increase in heart rate? And along the same lines, can you speak to the idea of too much exercise? So, in this person’s case, they’ve always run marathons, and have become afraid of going too hard and toned it down to half marathons as a compromise, which I still think is amazing. So again, what level of exertion is reasonable?
Another good question and congratulations to that person for being so active. It’s very impressive. And afraid the answer is that there is no one level necessarily. Exercise is one of those things that the more you do it, you kind of buildup gradually. And then, the more that you’re able to do. So, for somebody who’s training to do a marathon, for them to go actually run the marathon doesn’t quite take the same amount of exertion and toll on the body as it would for somebody who hasn’t been training to go run the marathon. That could actually be disastrous for that person. So, there’s not necessarily a level of exertion that is appropriate for everyone or everyone with epilepsy.
I’m trying to think of the best way to answer the question. I think, again, it has to be individualized. But for that person, listening to their body is probably a good way to start. If they’re a marathon runner, they’re probably familiar with the feeling of a good type of hard workout and a bad type of hard workout, where hard feels too hard.
So again, I can’t give a definite answer to them, but I think that working with their neurologist and just listening to their body. But I will say, running and that type of high-intensity exercise… High intensity, so that means the intensity of the exercise in that moment was not shown to increase seizures. But when we’re talking about marathon running, we’re actually talking about low-intensity exercise over a longer period of time. And that, I don’t think has been looked at in people with epilepsy and probably won’t be. We won’t be making them run long duration to test that, so we don’t have the data there.
Are there any limitations on exercise when you have a VNS?
The reason I say that though is that some of the newer VNSs, they can be set to go off if they detect increased heart rate. The reason for that is that a lot of seizures present with increased heart rate or a fair amount of them do, so the idea is that the device can actually detect that and then go ahead and give a stimulation to help abort that seizure. So of course when you exercise, your heart rate will go up. So, in those cases, again, it still wouldn’t necessarily mean that you couldn’t exercise, but you might want to be aware of that and be prepared for the idea that your device might go off a lot more.
And if you’re somebody who wants to engage in exercise regularly, depending on your seizures and your type of epilepsy, it might be something that your neurologist could adjust. They might be willing to adjust it so that it doesn’t go off every time your heart rate increases a little bit.
So, to some of the data that were presented, on the mood graph, why didn’t exercise or activity decrease fatigue in relationship to non-exercisers? Both groups scored the same regardless of activity.
Good question. And I don’t know the answer to that, but I can offer a few points of speculation. So, it’s possible that the group that was exercising… I believe in that study it was either six weeks or 12 weeks. But when you first start an exercise regimen, you might actually be a little bit more tired because your body is working harder to adapt, which in the end is good, but in the short term could cause a little bit more fatigue. So it could be partly due to that.
Could be, again, like somebody has already mentioned, that sometimes the seizure medications are contributing to some kind of fatigue or sleepiness. And so, it might be that in that study, the exercise group, despite reporting that they had more vigor, we saw that component had gone up, that maybe that wasn’t enough to overcome… That their medications were still making them feel a little bit fatigued. And I don’t know how those two terms are perceived differently, vigor and fatigue.
So again, I’m speculating on that, but I think it could be a lot of different variables. But we do have data from other studies and from that study, showing the vigor, where people have perceived that their energy levels are increasing. And so, I didn’t show those graphs, but when we look at the quality of life scales and epilepsy, they have subdomains. So, a lot of them will look at physical function or energy level as a subdomain of the quality of life scores. And so, with exercise, in a couple of studies, people have reported improvement in the energy or the physical function domain of those subscores. So again, I can’t explain that one study, but I do think in general people have been reporting feeling improvement in their energy with exercise.
Is there a difference between physical activity indoors versus outdoors?
That’s a good question. I guess, it depends on what you’re looking at, a difference in what exactly? But being outdoors has been shown to improve mood, even if you’re not exercising. Being outdoors in the sunshine and the fresh air, that does seem to do a lot of good for a lot of people. So, I would say if the weather’s okay and you’re able to and you have the choice between the two, then going outdoors probably would have more benefits for you health-wise.
However, if we’re talking about a dangerous outdoor situation, maybe it’s not safe to walk in that neighborhood, or the weather’s bad, or being at home and doing a stationary bike means you can have family members nearby who could help you if you were to have a seizure, whereas if going outdoors, your only option is to ride the bicycle, which that was a group two sport because you’re out in traffic and everything, then looking at the difference between those two, it certainly would be safer to do the stationary bike inside. So probably depends on what you’re trying to see a difference in, but there are differences between the two. But then, at the end of the day, physical activity is physical activity. So whichever way you can safely get it would be what I would recommend doing
And just want to be clear that while some of the data focused on mesial temporal lobe epilepsy, this is broad advice for anyone with epilepsy, it’s not just restricted to mesial temporal lobe, correct?
Yes. Thank you for clarifying that. So, most of the studies looked at adults and kids, focal types of epilepsy, general type of epilepsy, some specific syndrome. So, it’s broad advice for all epilepsy.
Are there any mitochondrial effects from exercises that could be a part of the benefits to epileptics from exercise?
Yes is the short answer. They’ve looked at the mitochondrial effects of exercise in humans and a lot of other disease in the general population, in other neurological diseases. Again, as far as I know, we don’t have published data on that in people with epilepsy. But most likely, any of that, that’s affecting brain health is probably going to be beneficial for people with epilepsy.
The reason why we still need to specifically look at it in the epilepsy population, and we can’t just assume, “Oh, it’s good for brain health in Alzheimer’s, it’s probably good for epilepsy,” is that epilepsy is somewhat unique than other neurological diseases, in that it’s increased brain activity, increased signaling. And so, some of these neurotransmitters and things that might be more activating in the brain, which might help dementia or memory loss, we don’t really know necessarily the effect it would have in epilepsy.
So for example with BDNF, that increases synaptic plasticity and neurogenesis, but that’s not always beneficial in people with epilepsy. So, if you have new neuronal connections being made, it’s possible that kind of aberrant sprouting could actually be part of what could be related to the seizures themselves. So, we don’t know any of that, but that’s why we need to look at it in epilepsy, even though we’ve looked at it in other populations. And right now, we don’t have those answers.
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 Epilepsy 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.
Epilepsy is the third-most common neurological disorder in people age 65 and older after stroke and dementia, conditions which themselves increase seizure risk.1
This webinar discussed the relationship between epilepsy, dementia, and stroke, and discussed whether people with epilepsy have an increased chance of developing dementia as they age. Viewers also learned about strategies that people with epilepsy can implement to reduce their risk for these conditions.
World Health Organization. “Epilepsy: A Public Health Imperative.” Date: 2019. Date accessed: May 3, 2021. https://www.who.int/mental_health/neurology/epilepsy/report_2019/en/
About the Speaker Dr. Alice Lam is Assistant Professor of Neurology at Harvard Medical School and the Massachusetts General Hospital. As a physician, Dr. Lam takes care of patients in both the subspecialty Epilepsy Clinic as well as the Memory Disorders Unit. Her clinical and translational research program explores the interface between epilepsy, the neurodegenerative diseases, and cognition, using a combination of neurophysiology, neuroimaging, artificial intelligence approaches and cognitive outcomes.
Q&A with Dr. Alice Lam
Our population is aging. The number of Americans over age 65 is going to double in the next 30 to 40 years. And as we’re getting older and watching people around us get older I think it’s totally natural to wonder how are we going to live our best lives when we’re older adults? We all want to have a sense of independence, we want to have the ability to do things for ourselves, to make decisions for ourselves. We all want to preserve our memory, our ability to think clearly, to interact meaningfully with the world around us and to have ourselves represented.
How will having epilepsy affect your brain as you get older?
Dr. Alice Lam: Let’s start with a pop quiz. The first question is what age group has the highest proportion of people who are currently living with epilepsy? That’s regardless of when they’re actually diagnosed with epilepsy. Is it children, young to middle-aged adults, or older adults? I’ll give you the second question, which is, what age group has the highest chance of developing epilepsy, meaning being newly diagnosed with epilepsy?
The answer turns out for both questions is the same, it’s older adults.
People over age 65 are most likely to either have a diagnosis of epilepsy already, meaning they developed epilepsy as kids or as adults and have now grown old with epilepsy, or to develop epilepsy for the first time. And in the United States alone, over 100,000 older adults each year are newly diagnosed as having epilepsy.
Older adults are the fastest growing demographic in the U.S. as well. I told you earlier that the number of older adults is estimated to double in the next 30 to 40 years, so now I hope you can see why aging and epilepsy is such an important topic, this is a public health issue. It affects a lot of people currently and it’s going to affect a lot more people in the next few decades.
What are changes in our thinking and memory that happen normally as we age and how does that differ from dementia? Does having epilepsy increase my chances of developing dementia?
Dr. Alice Lam: Yes, having epilepsy does increase your risk of dementia, and it does increase your risk of stroke. But the good news is that you can substantially reduce your risk of both dementia and stroke with some very simple changes in your day-to-day life.
We lose brain cells, we lose connections between brain cells. Some brain cells shrink in size and the wiring between brain cells also shrinks. And related to these structural changes, our cognitive abilities also change.
We know that as people get older even if they’re healthy we start to have slower processing speed. Our working memory gets a little worse, our autobiographical memory, meaning our recollection of events that happened to us earlier in life, these details start to get a little bit fuzzier, and our ability to solve problems, come up with new ways of doing things also declines. But it’s important to note that these normal changes even though they exist they’re pretty subtle so many people might not even realize or might not be aware that these changes are happening. And these changes are generally not significant enough to interfere with a person’s ability to perform their daily activities.
How is normal brain aging? How’s that different from dementia?
Dr. Alice Lam: We know that there are some cognitive declines that happen in normal aging, but when people start to have a decline in their cognition that is more than we’d expect for normal aging, then we start to worry about whether or not they might have dementia. And so the precursor to dementia is called mild cognitive impairment. People with mild cognitive impairment have a decline in their thinking that’s significant often, so they notice it themselves or their friends or their families notice it. But despite this decline they’re actually still functioning pretty well. They can still work, they can drive, they can take care of their finances, they can cook meals, they can do all the things that they would normally do in their daily life.
When someone’s cognitive impairments become severe enough that they start to have problems with their activities of daily living, then we say that that person’s developed dementia. This might mean that they’re no longer able to figure out how to pay their bills or they’re no longer able to work a job that they’ve worked for the past 10 or 20 years, or they’re no longer able to figure out how to cook meals. So there’s different stages of dementia depending on how cognitively and how often functionally impaired someone is.
How do we explain this mismatch that you we can have someone with severe brain pathology whose mind is still able to function at a very high level?
Dr. Alice Lam: Well, one of the ways to explain this is a concept that’s called cognitive reserve. You can think of cognitive reserve as your brain’s ability to function well even the setting of having brain disease or having an injury to your brain. Cognitive reserve is how well your brain is able to compensate for disease or for injury. It’s your brain’s ability to find other ways of getting a job done if the usual way of getting things done suddenly becomes unavailable. I think about cognitive reserve in terms of brain networks, how different parts of the brain communicate and work together. And high cognitive reserve means that you’ve developed brain networks that are efficient and that are flexible.
Let’s say you live in this town and you want to go from your house to the pool, that’s pretty easy. There is a road that connects those things directly. All right. Think of brain networks as a system of roads in the brain that connects different parts of the brain that need to work together. What happens if there’s damage to a brain network, for example, from a stroke or even from a disease like Alzheimer’s disease? What happens if the damage affects this brain network that goes from your house to the pool and you can’t use it anymore? Now, how are you going to get from the house to the pool?
If you had developed other roads, other brain networks, even if this one road was blocked you might still be able to figure out how to get from your house to the pool. So you could take this path or you can take this path. These paths may not be as efficient, they might not work as well as the original road you are using but you’ve used these other networks to compensate for the fact that that main network is no longer working. That’s what cognitive reserve allows you to do.
I think that one of the best things about cognitive reserve is that it’s closely related to your life experiences and to your lifestyle. And that means that cognitive reserve is something that we can actually modify and improve over the course of our lives. We know that things like education and activities that are intellectually or socially stimulating, these things can greatly build cognitive reserve, and these factors actually it turns out can reduce your risk of dementia by 30 to 40%. While a lot of what I’ll say in this talk may sound like doom and gloom and no one wants to hear that they have an increased risk of dementia, what I want you to know now is that you can actually do something to reduce this risk, you can build cognitive reserve.
How does having more cognitive reserve actually allow you to reduce your risk of dementia?
Dr. Alice Lam: Let’s imagine someone who has early stages of Alzheimer’s disease. And Alzheimer’s disease, it’s a slowly progressive disease where your cognitive function gradually worsens over several years. Now, when this person’s cognitive function declines enough that it starts to interfere with this person’s daily activities, they’ve crossed the threshold and we can say that this person has developed dementia.
Now, what would this curve look like if this person had a severe head injury a few years back? Well, if they had a severe head injury there’s likely been damage to some of their brain networks and other brain networks are now having to compensate for that injury, so this person will be starting out with less cognitive reserve. And with less cognitive reserve but the same amount of Alzheimer’s disease pathology in the brain this person is going to be on a different trajectory shown on this red curve here. And you can see with less cognitive reserve this person will actually develop dementia at an earlier age compared to if they hadn’t had this brain injury.
Now, let’s take the opposite example. Okay, let’s take someone who has a healthy brain, a high amount of cognitive reserve. Someone who has high cognitive reserve, even with the same amount of Alzheimer’s disease pathology in the brain will actually develop dementia at a later age. And depending on how much later this age it’s possible that they might actually pass away from something completely different before they even ever develop memory problems or dementia. And so you can live your whole life without ever developing dementia because you’re able to kind of push it far enough down the line.
The bottom line that I want to make here is that brain injuries and low cognitive reserve, these things put people at increased risk of developing dementia earlier in life than they normally would. Whereas high cognitive reserve can actually delay the onset of dementia and in some people it might delay the onset of dementia to such an extent that for all practical purposes it’s prevented that person from getting dementia. That’s why cognitive reserve is really important.
How might this apply to people with epilepsy?
Dr. Alice Lam: The bad news is that people with epilepsy are two to three times more likely to develop dementia compared to people without epilepsy. Let’s say there’s a large amount of person to person variability in calculating this risk and there’s many factors that determine a given individual’s risk of developing dementia. And some of these things they might include things like when did you first develop epilepsy? What’s the cause of your epilepsy? How frequently do you seizures? How many and which seizure medications do you take? How long have you been taking seizure medications? And do you have depression or anxiety? Now, it can be tricky to try to figure out the individual contribution of each of these things because many of these factors are pretty closely intertwined. If you have frequent seizures you’re probably going to be on more seizure medications, and if you developed epilepsy early in life you’re probably going to have been taking seizure medications for a longer period of time. So it’s a little complicated to tease apart.
I’ve been talking a lot about the risk of developing dementia in someone with epilepsy but what I want to point out here is that most memory problems in people with epilepsy aren’t actually related to dementia. I think that this is something that my patients ask me about a lot because I think most people are… Dementia is one of the most worrisome things for a lot of people because right now we don’t have cures for diseases like Alzheimer’s disease or vascular dementia. But as I said earlier there are a lot of things we can be doing to reduce our risk of developing dementia and the setting of these diseases.
What can we do to keep our brains as healthy as possible as we get older? What are the things that we can do to actually maintain our brain health?
Dr. Alice Lam: Up to one in three cases of dementia could be prevented with just simple changes in lifestyle. What I’m going to share with you are recommendations that are largely agreed upon by many major health organizations on how to maintain brain health. And this applies not just to people with epilepsy, actually these are recommendations that are made to adults, essentially people who will be growing older. And these recommendations though I think that they are informative for people with epilepsy again because as I talked about people with epilepsy have a lot of these risk factors as they’re accumulating through life.
First, there are things we can do to increase cognitive reserve, and the biggest one there is to keep your mind active. Think of this as exercise for your brain. This could be reading, doing crossword puzzles, playing card games, using the computer, photography, playing a musical instrument, things that keep your mind going. We know that cognitive activity in mid and late life is associated with a 30 to 40% reduced risk of dementia, so really important to keep your mind active throughout life.
Second one there, protect your brain from injuries. Now, particularly for people with epilepsy seizures can put you at risk for head injuries and this is not something that you have much control over, unfortunately, but that means that you need to be extra careful and protect your brain when you can. So simple things like wearing a helmet if you’re riding a bike or wearing your seatbelt in a car. And then getting enough sleep, these are all things that will boost your cognitive reserve.
And then the third set of things as you might guess from the theme of this talk is controlling vascular risk factors, so stay physically active. The recommendation from the U.S. Department of Health and Human Services is that adults get 150 minutes of moderate intensity aerobic activity each week. What’s moderate intensity aerobic activity? This is pretty much any activity that gets your heart rate up, it gets your heart beating faster. It could be something like brisk walking, dancing, gardening, biking, water aerobics, things like that, but it’s really important to stay physically active.
Work with your primary care doctor to make sure that things like high blood pressure, diabetes, and cholesterol are controlled. These will reduce your cardiovascular risk. Quit smoking. I know that many people think about smoking primarily in terms of risk for lung cancer, but smoking it turns out is horrible for your blood vessels and it’s pretty horrible for your brain as well, so if you can quit smoking that may be one of the best things that you can actually do for your brain.
Eat a heart-healthy diet. What I often recommend to my patients is diet that’s similar to a Mediterranean diet. That’s a diet that has a lot of fresh fruits and vegetables, lean meats like chicken and fish, and try to avoid red meats like beef. And then finally avoid excessive alcohol consumption. There are mixed studies and you’ll probably hear on the news, whether small amounts of moderate amounts of alcohol may be good or bad for your brain health, so that’s mixed. But I think pretty much everyone agrees that excessive alcohol use which is basically more than one drink a day for women or more than two drinks a day for men that you should avoid that if you want to maintain good brain health.
The take home points for today. The bad news, epilepsy is associated with a two to threefold increased risk for dementia and stroke. The good news, staying mentally and physically active and controlling vascular risk factors can substantially reduce your risk for developing epilepsy and stroke. I hope that encourages you to go out, be mentally and physically active, and to try to keep your brains healthy as you grow older.
It is well-documented that AED side effects are more pronounced in the elderly because metabolism is slower. How should this be communicated to neurologists? Are they aware, and how often and what age do you recommend that dosages be lowered because of this?
Dr. Alice Lam: That’s a great question. The answer to that is a little complicated, but you’re definitely right that as people get older our metabolism slows. Our liver slows down the metabolism, our kidneys slow down eliminating medications from the bloodstream. But that’s also highly variable from individual to individual and as you know people have different body weights and there’s a lot of different variability person to person. I think if you’re aware of that and you think that this may be something that affects you I think it’s important to talk to your doctor about that.
One thing that your doctor can check, they can look at the level of seizure medicine that’s actually in your blood and that will give for you… That basically tells you how your body is metabolizing the amount of medication your doctor is prescribing for you. And it might turn out that maybe your doctor was unaware or your level was actually a lot higher than they thought it was and you might be able to reduce your dose of seizure. But that’s one objective way you can decide whether you’re on too much seizure medication as you get older.
Can Dilantin affect balance over time and do you have any comments on this or suggestions about what to do about it?
Dr. Alice Lam: Dilantin can definitely affect your balance and it can do that in a few different ways. One, if you’re on too high a dose of Dilantin you can actually have this Dilantin toxicity where you’re off balance and you’re wildly… Some people describe it as this feeling of being drunk without having had anything to drink. And so if your dose is too high you might notice that, and if that were the case you’ll probably notice it usually about the hour or two after you take your medicine. That’s one way it can affect dizziness.
Long-term it can also affect a dizziness in a number of different ways. Sometimes people can develop what we call a neuropathy that’s associated with long-term Dilantin use. That means that the nerves that go from your spinal cord down to your feet and help your brain know where your feet are and what they’re feeling on the ground below, those nerves can get damaged and you might not be able to feel your feet as well. And we also know that Dilantin over time can affect the cerebellum. That’s a structure in your brain that controls balance and coordination, things like that. So, yeah, I think that there is a fair amount of evidence that Dilantin can affect your balance but again it can do that in different ways.
Is there anything that can be done about that?
Dr. Alice Lam: Well, if you’re on too high a dose of Dilantin then obviously reducing the dose or trying to adjust how you take those doses or maybe even changing the medicine if it’s not the right medicine for you would be one way to do it. Obviously Dilantin is an older seizure medicine and I tend to avoid using it in older adults for a number of reasons. It tends to be older adults who are on it because if they were diagnosed with epilepsy years ago that’s what was available years ago and a lot of people are very comfortable staying on that medicine if it was working for their seizures, and so that’s often the case of patients who come to see me who are on Dilantin already.
There’s a lot of newer seizure medications that may not have those kinds of adverse effects, for one. Dilantin also, the way it’s metabolized is a little interesting and there can be interactions with a lot of other medications, not even just seizure medications but other common medications that you might take for other conditions. In an older adult if you’re running into these problems you might think about switching off of Dilantin for that reason, the medication interactions and these long-term effects that we know can happen with it.
If a person is over 80 and has had no seizure activity in 15 years, do you think medication dosages could be lowered?
Dr. Alice Lam: It’s something to think about, again, this is something that’s very individual and I can’t answer that without knowing more details of what happens to you when you’re having a seizure or what risk for injury might you incur if you did have a breakthrough seizure because you lowered your dose. But these are tricky questions. Even if I did know more about this person it’s not something that I could answer concretely, it’s something that really depends on the risk benefit ratio for each person and how willing they are to take a risk like that. I think you have to think about what would happen if you had a breakthrough seizure versus how bad it is to be on the level of medicine that you’re on right now. Are you having a lot of side effects from it or not? You just feel you want to be on a lower dose. The good thing is to discuss with your neurologist.
So a rupture of an arterial venous malformation maybe has led to development of tonic-clonic seizures and many cognitive issues, including problems with memory. Is there a greater risk of this person acquiring dementia as they age?
Dr. Alice Lam: Yes. So having this brain injury and having these cognitive issues that result you’re now at a lower cognitive reserve than you would have been before this AVM ruptured. And so I would say that, yeah, if you were to develop the kind of changes in your brain from Alzheimer’s disease you might be more susceptible to having dementia earlier from that than you would have had you not had this brain injury. But it doesn’t mean that you shouldn’t still try to reduce your risk for that.
At what point in time do you start having the discussion about driving or not driving?
Dr. Alice Lam: I think that sometimes people have awareness or insights to know when they feel it’s not safe for them to be driving. But it’s a really hard thing to actually make this assessment in my clinic, in my office, because I’m seeing somebody, I’m talking with them but I have no idea when they get behind the wheel how they would react to things. I don’t know, what would they do? Would they be able to stop in time if a kid ran out in front of the car to run after a ball or something like that? What would they do if a car swerved into their lane all of a sudden, how would you react to that? These kinds of things are really hard to gauge in a clinic.
One thing I’ll often do is sometimes I think it becomes pretty clear that someone shouldn’t be driving. They’re either getting into accidents or they’re getting lost while they’re driving, things like that. And those cases are a little bit more straightforward and often families will take away their loved one’s keys before even asking me about it. But when it gets a little grayer, when things aren’t quite working as well as you want to in your brain, but a lot of you’ve been driving your whole life, it’s an automatic thing almost, you don’t have to think about it so much.
What I’ll often do is I’ll recommend that people undergo a formal driving assessment. And so there are different centers that do this. There’s occupational therapists who are trained in assessing people’s safety in driving, and often this kind of driving assessment it may involve pen and paper tests first and if you do fine on that then you would do a behind the wheel on the road test where someone will be with you and assessing how you’re able to react to different things that happen. And so I often lean fairly heavily on these kinds of assessments to make a good assessment of that. It’s again, as I said, it’s really hard to know from just talking to someone in my office how they would actually do on the road.
Are some epilepsy medications worse for dementia?
Dr. Alice Lam: One way to ask it would be, are some epilepsy medications worse for cognition, not necessarily dementia? But I guess if they’re worse for cognition then they’re not going to help if you have dementia either. So if I ask my question, are some medicines worse for cognition? There are some medicines that we know have a worst cognitive profile compared to others.
Now, again my patients can respond very differently to seizure medicines. Again, there’s a lot of inter-individual variation, but generally there are some medicines that are thought to be relatively neutral or relatively… That they don’t really affect cognition too much. And those medicines that people often use in that case are levetiracetam or Keppra and lamotrigine or Lamictal. Those are thought to have relatively benign cognitive effects.
Tut then there are medicines that we know can definitely worsen cognition. These tend to be some of the older ones, so phenobarbital has been shown to have poor effects on cognition. Dilantin even can do that as well and carbamazepine. Some of these older medicines may have more of those more pronounced effects. But, yeah, I think, again, as in that slide where I looked at what kinds of things can affect memory in someone with epilepsy, choice of seizure medication can definitely do that. Topiramate, that’s another one that tends to affect cognition pretty badly.
How about zonisamide?
Dr. Alice Lam: It can. Again, it really varies from individual to individual. Zonisamide wouldn’t be on my top list for someone who’s having cognitive problems already, it would a bit further down the list. But I would say it’s not entirely neutral but it’s not as bad necessarily as some other ones. But everyone is… Again, I can have one patient who’s on a whopping dose of a medication, has no idea it’s in their system. And have another patient who’s on the same medication on a really tiny dose and is falling over because the side effects are so bad. So it’s really hard to predict that unless you actually just try it and see how you feel on it.
If somebody is feeling a cognitive impact and it’s possibly because of their medication, are those changes reversible if patients switch medications?
Dr. Alice Lam: Some of them can be, yeah. Again, if it tends to be a, “I just started this medicine a couple of months ago and I and my family are all noticing that I’m a lot slower on forgetting conversations.” Then yeah, in general come off that medicine. I would expect those side effects to get better as you’re off the medicine. But some of these older medicines like phenobarbital, Dilantin, if you’ve been on them for years and years and now you’re coming off them it may not be as great a benefit because there are some long-term changes from those medicines. So you might not notice as great a benefit but it might still be worth trying to come off them to see if you do get a benefit.
Can testing neuropsych evals tease out declines in cognition based on AED side-effects versus declines resulting from regular aging? Can testing determine the source of the cognitive decline?
Dr. Alice Lam: Yeah, that’s a great question. I use neuropsychological testing actually pretty frequently in my patients with epilepsy and memory problems. I think that there’s a number of things that can be helpful with it and often I do use it for the purposes that you’re talking about to try to tease apart what is actually causing this person’s cognitive impairments. Because one thing that neuropsych testing allows you to do is it really… I mean, if any of you have ever done neuropsych testing it’s a several hour-long cognitive test. You never knew that there are many tests for your learning and for your memory and things like that. So it’s very detailed and it can get in very good detail what parts of your thinking are working well and what parts of your thinking aren’t working well?
A lot of patients will say, “My memory is bad.” But actually it’s not their memory that’s bad, it may actually be their executive function, their ability to plan and organize things that’s more affected than their memory. And so neuropsych testing allows you to tease apart some of those things. And depending on what cognitive domain, whether it’s memory, executive function, language, any of those things, depending on which domains are affected, that can often help us hone in on what might be causing those changes.
And so sometimes that can help me distinguish between whether it’s someone’s longstanding epilepsy that’s causing their cognitive troubles or whether it might be something new or different, maybe they’ve developed dementia or maybe they’ve developed depression late in life. Trying to tease apart some of those factors, neuropsych testing can be helpful for that, yeah.
Is the ketogenic diet a heart-healthy diet?
Dr. Alice Lam: Oh, that’s a tough one, actually. I actually I don’t know the answer to that. I think it’s tricky because obviously it’s a very fat-intensive diet and I should actually look that up, but I do not know the answer to that offhand. I mean, I know that people who are on the ketogenic diet get monitored frequently. They have their cholesterol levels checked, they have a lot of these metabolic things checked. But I don’t know what the data is in terms of long-term, if it actually predisposes you to having heart attacks because of the high-fat content or not.
Does chronic microvascular ischemic change get worse with time and does it make epilepsy worse?
Dr. Alice Lam: Okay, that’s a good question. For those who don’t know what is chronic microvascular ischemic change, the best way I can describe it is let’s say you have an MRI that’s done. What it looks like on an MRI are these little white spots actually, these little white spots that you don’t normally see but you do tend to see them more as people get older. And what we think of these little white spots is that it’s reflecting damage to really small blood vessels in the brain. It’s showing you that there’s some disease of the small blood vessels, they’re affected somehow. And sometimes that can be due to the kinds of vascular risk factors that we’ve been talking about, high blood pressure can definitely do that. People who smoke definitely you’ll see a lot more of these microvascular changes in the brain.
Can that worsen… I think that was the question, can it worsen epilepsy? What I’ll say is, there have been studies that been done recently looking at what are the risk factors for people who develop late-onset epilepsy. And it turns out that people who have these chronic microvascular ischemic changes, again think of them almost silent changes. Most people don’t know that they’re there, it’s something that you see on MRI, on brain imaging when you do the imaging but they’re silent. Think of it as silent cerebrovascular disease. It tells you that your blood vessels are not as healthy as we’d like them to be.
But anyhow, if you have those kinds of changes in mid-life in your 40s and 50s, that is actually a risk factor for developing late-onset epilepsy. Whether if you already have epilepsy that kind of change will worsen your epilepsy. I’m not sure if we know that or not, but again, in terms of this vascular risk I’ve been talking about, think about this chronic microvascular change as another sign that maybe things aren’t as healthy as you want them to be.
Are there different outcomes on epilepsy in other areas of the brain, for example, parietal lobe? Has this been studied or has it just been focused on TLE?
Dr. Alice Lam: A lot of the studies on cognition and epilepsy have been done in people with temporal lobe epilepsy. It’s the most common focal epilepsy so there’s a lot more people that have it compared to things like parietal or occipital or frontal lobe epilepsy, that’s probably one of the reasons. But also we know that temporal lobe epilepsy affects the temporal lobes and we know that those are really important for memory as well. I think that historically that’s been the case and it’s hard to do… You need really big studies in order to make these kinds of observations or to get these kinds of insights you need a lot of patients over time too.
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 Epilepsy 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.
Siblings of children diagnosed with a severe childhood epilepsy known as a developmental and epileptic encephalopathy (DEE) often play an integral role in the care of their brother or sister. While they may learn patience and compassion at an early age, the mental health impact on these siblings can be enormous and often overlooked.
Children who have a sibling with a DEE may experience very strong emotions such as guilt, anger, sadness, fear, anxiety, and depression. The Siblings Voices Study, which included siblings in a variety of age ranges, was created to help families understand more about the impact of having a brother or sister with severe epilepsy and how these siblings adapt.1
This webinar discusses some of the key research findings of the Siblings Voices Survey, including some strategies to help improve the mental well-being and social development of siblings and resources that are available for families.
Psychosocial impact on siblings of patients with developmental and epileptic encephalopathies. Laurie D. Bailey, Lauren Schwartz, Tracy Dixon-Salazar, Mary Anne Meskis, Bradley S. Galer, Arnold R. Gammaitoni, Carla Schad, Epilepsy & Behavior, 2020, Volume 112, 107377
About the Speaker Dr. Kelly Knupp is Associate Professor of Pediatrics and Neurology at the University of Colorado. Dr. Knupp practices medicine at Children’s Hospital Colorado in Aurora, Colorado and is the Associate Research Director of Neuroscience Institute and Director of the Dravet Program. Her interests are epileptic encephalopathies including Dravet Syndrome and infantile spasms. Dr. Knupp is also a member of CURE Epilepsy’s Scientific Advisory Committee.
Q&A with Dr. Kelly Knupp
For siblings of children who have frequent seizures or other types of associated unpredictable, visible medical things that need urgent care like respiratory events, is there a language, or are there tips to make this easier on the sibling?
Dr. Knupp: I think it’s really important to meet the siblings where they’re at. But I do think it’s important to talk to them about it. You may have some local resources with child life who may be able to come up with some very age appropriate terminology to discuss that. I know at my institution, our child life personnel are available to talk to siblings just as much as they are to talk to patients and are really good at figuring out how to turn that terminology into something that’s child-friendly. So ideas like having an IV that goes into your blood vessels paints a very different picture for a five-year-old than it does for a 15-year-old. So it’s really important to think about the words you’re using and how you describe it.
But I think as a parent, what’s also important is to ask clarifying questions to see if the sibling has really understood what you are trying to describe, or if they came up with something scarier in their head. That’s more often what happens, is we use words and children may misinterpret that as something scarier than what’s really happening. But I think knowing your resources and trying to find help with that can be really helpful. There are a number of books out there that can help with some of these specific things as well. And usually child life is aware of those books, or if there’s a family library at your hospital, they often have a number of these books around that can help describe those things.
Are there other helpful literature or resources in general to share with families who are struggling?
Dr. Knupp: Again, I would probably go back to the child life specialists and the family library. They often have sort of the best group of books, the… We actually turned to our epilepsy foundation to provide those books about epilepsy. So I think… I wish I knew of a great resource that listed all of those books. And maybe if somebody has a good idea of those resources, they can post them in the chat to share them with us, that really would be an amazing resource for families if there was a website that they could go to and find those.
One person notes that she believes that there’s a list of books on epilepsy.com. As a sibling myself, I pay attention to this space and there are lots of great books that span the age ranges. I was just reading one over the weekend that was really targeted to the younger set to talk about a sibling with disability. In this case it was somebody with autism, but clearly many of the context are the same. This particular book also had a workbook like a coloring book where a child could express their emotions.
Dr. Knupp: Along that line, one of the things I didn’t mention, I’ve had a number of siblings who have used an art therapist, which has been really helpful. It’s been really impressive to me to see some of the artwork that comes out of that.
What is most impressive to me is that oftentimes what the children think is going on is far worse than what’s really happening. particularly when our patients are going through things like epilepsy surgery, we have found that it’s really important for those siblings to be able to come into the hospital and see what’s happening to their sibling because otherwise what they picture when they hear about things like intracranial electrodes and surgery is so much worse than what’s really happening. It’s really important for them to see the real thing and know that their siblings are safe, but art therapy can be particularly powerful and helpful.
This person has found that her parents were also emotionally impacted, what resources are available for them?
Dr. Knupp: Yes. Parents definitely can be emotionally impacted by this. I think that every parent who has a child with a chronic illness really has to go through the whole grieving process. I think it can be really helpful to talk to other parents. I think it’s helpful to have a good social support network and it may require therapy. It may be that they really do need to sit down with a counselor or a therapist to work through some of that, and also have some insight of whether they may have some underlying anxiety or depression that could be contributing to this as well. And grieving is something that everybody does in different ways. So some people move through the grieving process fairly quickly, some people stall at one of the stages. So I think trying to get help to continue to move through that process and come to a place of acceptance can be really helpful for everybody in the family.
To your point, Kelly, I think we are recognizing it as a community that this is not post-traumatic stress, this is traumatic stress and chronic stress and that process starts very early and it’s good to start addressing it early for all members of the family. So here is a question. There are so many ways a severe epilepsy divides a family in an effort to maintain some normalcy for siblings versus keeping the child with epilepsy safe. How do families accept the new normal and not allow it to divide a marriage?
Dr. Knupp: Boy, that’s a challenging question. That’s a very complicated question and we know that divorce rates are higher in families with chronic illness. I think the more parents are aware of that, the more they are open to receiving some support and help through that. I think it’s also important for parents to recognize that their own individual processes are going to be different between the two of them just like it is with any other crisis or trauma that they have to deal with. And some families really do better when they’re apart than when they’re together, which is hard to say but that is the reality sometimes. But I think trying to intervene and trying to find some time to focus on yourselves as a couple can be very helpful.
That’s where extended family and friends often come in. It can often be very difficult to receive help from people outside your immediate nuclear family but I think that can be really helpful. Many of those people want to help you, they just don’t know how to help you. And so trying to establish that communication so that you can be clear with them of it doesn’t help me when you come empty my dishwasher, but it’s really helpful if you can take the kids for three hours so that we can go for a walk together and try to reconnect and trying to find ways to maintain your relationship that way. But I don’t think that there’s a perfect answer to this. Honestly, there are families with healthy children who struggle with this as well. So it’s not something unique to children with chronic illness, it’s just something that we see more often in children with chronic illness.
Can you discuss strategies for talking about risks of death for our eight-year-old with severe DEE has been near death multiple times and is in a hospice program? While those high risks for imminent death have been less frequent recently, should we still be open about discussing the risk with a five-year-old sibling?
Dr. Knupp: Boy, that’s tough. And I think this is where things child life can be really helpful. I mean, this is what child life does, is helps you have these difficult conversations. I think for the five-year-old, it’s really important to ask them where they’re at. And I would keep in mind that many siblings do worry about this and they may be afraid to talk to you about it. And so it may be helpful to say, “Hey, when you think about your brother or your sister, what worries you are you? Are you worried that he can’t run? Are you worried that he eats different food? Are you worried he’s going to die someday?” And try to figure out where that five-year-old’s at so that you can answer their questions in the place that they’re at. And I do think it’s important to talk about it and also to let them know that it’s not their fault. Particularly for a five-year-old the world still sort of revolves around them and so things that are not their fault still feel like their fault. And I think that’s really important to talk about that.
So here is sort of the intermediate age. The siblings in our family showed previous unspoken anxiety and concerns as they began planning their own families, thoughts about this.
Dr. Knupp: That’s very real, right? The question that comes up is will this be what my family looks like and do I have to worry about my children having this epilepsy? I think we’re in a better place now answering those questions than we were 20 years ago, because we know so much more about genetics. But I think having open honest discussions about that … I know that in my practice I’ve met a number of families who had sort of stopped looking for the cause of epilepsy for several years because it was exhausting, it was disappointing, it’s expensive, and it didn’t make a difference in the day-to-day care of their child. But when siblings started to approach sort of family planning age, it took on a new significance to reach out and have genetic testing done to figure out what were those risks really. So I think as much as you can provide information that usually is helpful.
I think also having open discussions about expectations of whether who will care for this child as parents get older. Oftentimes it’s very surprising because many times siblings will say, “That’s what I’ve always planned to do.” And the parents say, “Boy, I don’t want you to have this burden.” So it’s really important to have that discussion so that there’s a clear plan and clear expectations. Because more often than not, that’s the way that discussion goes: Parents are trying to find a way to reduce the burden and the siblings are saying, “No, no, no, I want to do this.”
Our focus was on our child with epilepsy and the therapy for coping with his diagnosis. How do we introduce this with his older sibling after the fact and make sure we didn’t neglect their feelings during this entire process of learning and understanding?
Dr. Knupp: Well, first of all, I would give yourself a break because you can’t undo the past. So if you think that you may have neglected something, what’s done is done and you can’t undo that. I think it’s important to focus on the here and now and moving forward and checking in with them and asking them, how are they feeling? Maybe if they’re older, talk to them about how you’re feeling and what it felt like in those times in the past that you felt like you had to do everything you can, and all of your energy had to focus on that and now you want to move forward. But I think it’s really important to be forward-looking with this. We’re not perfect, none of us are perfect and we’ve all had those moments where you really can’t undo that. But what’s important is to recognize the situation you’re in now and try to find the best path forward.
Just to clarify that child life is usually services at hospitals. Is that the case?
Dr. Knupp: Child life is usually services at hospitals, the vast majority of children’s hospitals have both inpatient and outpatient child life experiences. At my hospital they are able to meet with people before procedures, before appointments, they’re able to meet with siblings to talk about things like this. We actually have our child life specialists come up to our epilepsy camp to help out there. So child life specialists are usually open to a broad range of supports that they’re able to provide.
So somebody is asking for ideas for affordable counseling for parents. It’s definitely chronic anxiety and stress that would be lifelong. Is there anything available through hospitals for the parents?
Dr. Knupp: I think that’s hospital dependent. Here in my state, we would usually refer somebody to the Epilepsy Foundation for that as opposed to the hospital because we’re a children’s hospital. But I do think reaching out, and this again comes to sort of knowing your local resources. There often are sliding scale offerings for counseling available in a variety of places, and so it would be very helpful to start talking to your providers to see if they’re able to identify those. Interestingly, usually your primary care provider has the best knowledge of what those resources are. So it may not be your neurologist, it may actually be your family practice doctor, your internal medicine doctor or your pediatrician who may be able to identify those resources for you.
I wanted to learn more about the BLC, basic life support. Where does one find more about that? Is that something that might be available through hospital resources or hospice communities? But families are so burdened with all they have to do, how can we get them there quickly?
Dr. Knupp: Basic life support is usually offered through Red Cross. It can also be offered through your local fire departments, your hospital. So there’s lots of different resources for basic life support. As I have started mentioning this to families, it’s something that teenagers have really been open to taking. For many girls who may be taking babysitting courses or things like that, basic life support is usually part of that. But it’s a very systematic approach to what to do when somebody is in trouble and really can go a long way to alleviate some anxiety of what will I do if my sibling runs into trouble. I’ve been really surprised that many of the sisters may have already taken it with their babysitting courses and things like that, but many of the brothers have been really excited to take these courses and really do think that it helps a little bit in alleviating anxiety.
Here is less of a question, more of a statement, but I think it’s important to just share these things. So this person says that they have twins and a severely medically refractory child with severe SCN1A epilepsy and his needs completely consume me. I’m home schooling too to keep them healthy. I feel like I’m just meeting everyone’s needs and not spending quality time with my medically fragile child along with the twins. I feel guilty.
Dr. Knupp: I acknowledge that. I don’t have a way to fix that. I think that the truth is parents feel guilty all the time because we can’t be everything to everybody all the time. And that sounds like a particularly stressful situation. I think the first step is recognizing that you feel guilty and if you’re able to find ways to get some help so that you are able to first take care of yourself. Because if we’re not able to take care of ourselves, it’s really hard to take care of our loved ones. We sometimes forget that because we’re so busy taking care of our loved ones. But even if it’s taking a 20 minute walk, taking a break for a cup of coffee, taking those moments.
I really do encourage families to reach out to your friends and family for that type of help. They oftentimes want to help you and they just don’t know how. And that’s something that’s fairly simple, that maybe you just go sit in the backyard. So sometimes I know it’s hard to be away from your child with epilepsy because nobody else knows their seizures as well as you do and nobody else manages their seizures as well as you do. But if you can just get 20 minutes in the backyard to catch your breath, now they would probably be more than willing to help you with that and to identify those resources so that you can take care of yourself in that situation. I think parents always feel guilty and I’ll be the first to admit, I don’t have any children with chronic illness and I still have many, many moments of guilt for my parenting.
Thank you for that realism. But here’s an interesting point. While many families are able and want to help, this question is how do you get in-laws or extended family to believe that your child is having seizures and not faking it?
Dr. Knupp: I’ve encountered this. And I think oftentimes in that situation, it’s really helpful to invite them if you’re willing to, to visit with your neurologist so that your neurologist can help out with this. I’ve seen this come up not just with are these seizures really happening, but is this the management that really needs to happen? Sometimes we see this with ketogenic diet management where grandparents just don’t understand why they can’t slip a scoop of ice cream to the child and why that would be so detrimental. And so in those situations, it can be really helpful to enlist some help. I would definitely recommend that you give your provider a heads up that that’s what you want to discuss and what the concerns are so that they know to specifically address that during the visit. But that can be a really helpful way to manage that.
Here is one. It’s actually coming from a sibling and it’s actually a medical question, so I just want to change gears but sometimes it’s hard for siblings to get this information and so I do want to pose this question. Why would increasing dosage of medication be the go to answer when seizure frequency increases? Thank you in advance, worried older sibling.
Dr. Knupp: Often our thought when we’re doing that is if the medicine’s helping at a lower dose, it may help more at a bigger dose. We always have to be cautious though, because sometimes our medicines have the opposite effect. Sometimes our medicine can trigger seizures instead of helping with seizures. But we always want to make sure we maximize the medication before we move on to another medication. Usually that is our go-to, is to increase medications. The other thing that can contribute to that is particularly in our pediatric population, is that kids are growing. We may have to keep adjusting doses because the kids are getting bigger and so they need more medication to account for that bigger body size.
Thank you. As a sibling myself, I found it helpful to also go to medical appointments and learn more. So I encourage all siblings to do that, ask those questions. You may be taking on more responsibility and it’s just helpful to have that relationship with the medical provider and be able to go to them with these questions.
Dr. Knupp: Now I was just realizing at epilepsy camp, we have an Ask the Doc session where the patients, the campers who have epilepsy get to ask physicians questions because more often than not in the visit, their parents are doing the talking and not the kids. And I’m just realizing… and I had made a note to myself that we probably need to do a sibling ask the doc so that siblings have an opportunity to ask questions as well without everybody else interfering.
Thank you Dr. Knupp for spending your time and your expertise with us and answering so many great questions.
This webinar is supported with funding from Zogenix
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 Epilepsy 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.
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.
Have you ever been afraid to talk about your epilepsy to friends and coworkers for fear of repercussions? Epilepsy stigma is prolific and can affect all aspects of a person’s life. Approximately 50% of people in the US and Europe report feeling stigmatized because of their epilepsy diagnosis, according to recent studies.
Discover research findings about the public attitudes and beliefs about epilepsy, as well as how likely people with epilepsy are to encounter stigma due to negative public attitudes. We review how these harmful stereotypes affect quality of life, and explore what recent evidence suggests communities can do to improve public attitudes and reduce epilepsy stigma.
How can individuals overcome epilepsy stigma related to employment, the workplace, and co-workers? Are there strategies people can use?
The Epilepsy Action group is asked quite often on how to position telling your employer about your epilepsy. “If I’m going to be interviewed for a job, do I tell the potential employer that I have epilepsy?” The position people tend to take is not to disclose having epilepsy immediately. Sometimes you will be asked a question on an application form and you may have to then say something, but the epilepsy should not be the foremost thing. The question is, do you have the qualities and qualifications you need to do the job? We perhaps need to be more active by going to employers and presenting ourselves to them in a robust way as a person who has the skills that are needed.
Now, in the UK (and I suspect it’s the same in the US under the Americans with Disabilities Act) employers do have to make certain provisions for people who have long-term health conditions. When my team did the survey asking members of the general public in the UK about their attitudes and knowledge of epilepsy, we also did one with employers. We found that employers were a strange mixture of willingness to adapt and still holding negative attitudes. But they were willing to consider things like letting people do shorter days, letting them come in later in the morning if they needed to or leaving earlier, and so on.
Overall, employers surveyed were willing to consider adapting the work environment to fit the needs of people with epilepsy. I think that’s a really helpful thing to know and perhaps we need to just have that conversation with employers much more than we have so far to move their thinking along.
Are people with epilepsy who need to take time off for doctor’s appointments covered under the Americans with Disabilities Act?
I’m not familiar enough with the Americans with Disabilities Act to know whether these individuals are protected to go to doctor’s appointments. I would say that anyone who has an illness of any sort may need to see a doctor from time to time for a regular checkup or for treatment adjustments and so on. I think that employers would recognize that sometimes people have to take time off and that applies to anybody. To me, to you, to anyone.
I think we need to be firm about our rights as employees, but we also can turn to acts like the UK and the US Act and look at how those acts protect us in difficult situations where employers are being unreasonable.
How do we really change people’s attitudes in regards to cognitive ability?
Again, I think there is this problem that people always link having epilepsy with having conditions which may occur in people with epilepsy or without epilepsy. We do know that in people with very severe epilepsy, there may be cognitive problems, but we also know that the drugs people take to control their seizures may create some cognitive difficulties. Quite often people talk about having memory problems – they feel they aren’t as alert and so on.
These are difficulties, but the important message is they are not necessarily happening for every person with epilepsy. It’s the conflation of the notion that, if you have epilepsy, you must also have cognitive difficulties that we need to really need to change thinking about. That change requires a lot of educational efforts not only in general populations but also in particular subgroups like lawyers.
Do you know if countries are combating stigma by actually helping educate people about epilepsy in school-age children and adolescence?
There are projects to do that, but I think our difficulty is that these projects are often very small scale. It’s actually quite difficult to get funds to do those sorts of projects, which is where I think charities and their fundraising efforts have a big role to play. It can be quite difficult to convince teachers, school boards, and so forth that epilepsy awareness is an important part of educating of young and teenage children. Buy, yes, there are small scale initiatives doing that kind of work and perhaps we can use the outcomes from those initiatives to convince funders this is a really worthwhile educational activity.
Earlier you mentioned the difference between the developed and the developing world in regards to stigma. What are some of the principal differences?
The answer goes back to understanding how different cultures think about epilepsy. A few years ago, the US National Institute of Health had my team to look at the nature of epilepsy stigma in China and Vietnam. We explores what things cause epilepsy and how it can be treated, and then looked at how that differed from the way the public thinks epilepsy is treated. In those two countries, people’s understanding about what causes epilepsy are not hostile ideas, the sort that I mentioned in which people think someone with epilepsy is possessed by evil spirits.
The general notions in China and Vietnam were much more aligned with traditional Chinese medicine ideas about imbalance in the body systems. Epilepsy and seizures were perceived to be caused by bodily imbalance and treatments were focused on reducing those imbalances. In China, for example, people with epilepsy do take modern western drugs, but these individuals often thought the drugs were there to stop seizures and traditional medicine was needed to realign the body to rid you of epilepsy.
These are very benign ideas and there was a great sense of care towards people with epilepsy, but there was also a recognition that they presented danger to themselves, if not to others. For example, they couldn’t work in rice paddy fields, because they might have a seizure and drown. People were worried about them having seizures outside in the community and being treated badly, so caregivers tended to keep family members with epilepsy at home and isolated from others. People with epilepsy in China and Vietnam were not considered particularly good marriage partners because they were believed to be unable to perform tasks, like childcare, that marriage expects of them.
These ideas were very different from ancient ideas, but the impact tended to be the same. In fact, you see this kind of evolution of ideas continue to have negative impacts on people with epilepsy in other cultures, even though the ideas themselves are very different. If you look at some countries in Africa, you see very different ideas about causes of epilepsy compared to China. In these countries, sin and possession by evil spirits still are held to be important causes of epilepsy and ideas about the condition are very hostile. People with epilepsy are treated quite poorly in quite a lot of African countries. In some countries, epilepsy is referred to as the “burning disease” because… People believe you can’t touch someone who is having a seizure because they think epilepsy is contagious, so individuals fall into open fires and get burned.
So, I think those cultural ideas are really important and they do emphasize that you need to understand the ideas underlying epilepsy in order to develop educational programs.
The CURE Leaders in Epilepsy Webinar Series has covered many topics related to epilepsy and innovations in research. Check out our full list of available webinars here.
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.
Make a difference
Completing your gift helps make our mission possible.
On March 25th celebrate 
About the Speaker:
About the Speaker
About the Speaker
About the Speaker
How can individuals overcome epilepsy stigma related to employment, the workplace, and co-workers? Are there strategies people can use?