This episode of What The Health focuses on epilepsy, a disease that, despite affecting tens of millions worldwide, remains under-researched and stigmatized. The guest, Stephen Austin, a board member of Cure Epilepsy, shares his personal experience with epilepsy and discusses the organization's mission to advance research. The conversation covers the difficulties of diagnosing and treating epilepsy due to its varied manifestations, the impact of epilepsy on daily life, including the side effects of medications, and the importance of self-advocacy. The episode also addresses misconceptions about epilepsy, the potential of gene therapy and artificial intelligence in advancing treatment, and the critical need for more public awareness and research funding. Additionally, it highlights how many with epilepsy can lead normal lives thanks to current treatments, with hopes for more significant progress in the near future.

00:30 Unveiling the Shadows: Understanding Epilepsy

01:52 A Personal Journey: Stephen Austin's Battle with Epilepsy

03:46 The Stigma and Misconceptions Surrounding Epilepsy

06:18 Living with Epilepsy: Challenges and Coping Mechanisms

12:30 The Science of Epilepsy: Causes, Triggers and Treatments

25:22 Advancing the Fight: The Future of Epilepsy Research and Support

26:15 Joining Forces for a Cure: How You Can Help

27:55 Health Hacks and Community Support: Beyond Epilepsy

28:27 Closing Thoughts and Takeaways

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And maybe because there's still a stigma attached to epilepsy that makes it easier to put it on the societal back burner. That would be a mistake. Tens of millions of people suffer from epilepsy worldwide. Perhaps more than 3 million people in the U. S. suffer the same fate. And unfortunately, those numbers may not be getting any better.

In fact, it's possible they may be getting slightly worse thanks to an aging population. To be clear, there are no cures for epilepsy. Treatments can bring it under control for most, but not for everyone. And even the medications, while working, can have side effects that are unpleasant, And even discouraging for those taking them.

It's not all bad. Thankfully, progress is being made, but perhaps not fast enough. Our upcoming guest understands all of this from a personal perspective, and is here to shed some light on epilepsy, its challenges, current situation, and its possible future. It's worth a listen. We're at our section of What the Health, where we're going to talk to an expert on epilepsy to try and get a handle on exactly how large this disease is, how many people it's affecting, what it's about, because it seems to us like it's a little bit of a hidden disease, for lack of a better word.

So in any event, let me first welcome Stephen Austin, to the program, a board member of Cure Epilepsy. Stephen, welcome. Welcome.

[00:02:23] John Salak: We're going to talk about epilepsy obviously, but I did want you to just give us a little brief description. I know that you suffer from epilepsy, if that's correct.

And, as a board member of CURE Epilepsy, tell us a little bit about CURE Epilepsy because it's, I don't know if it's a foundation. I know it's a 501c3, but tell us a little bit about the mission of cure epilepsy before we

[00:03:19] John Salak: Are there several foundations around epilepsy as well? And we don't have to go into this in detail, just, as a reference point.

[00:03:42] John Salak: Okay. All right. So not great, but it's wonderful work. Epilepsy. Everybody has heard of epilepsy or it's, the word is recognized, but in some ways it seems like a hidden disease, a forgotten disease, a forgotten medical challenge, and from, cure epilepsy, evidently there are 65 million people in the world who suffer from epilepsy or have epilepsy, and I believe there are 3 to 4 million.

[00:04:13] John Salak: Okay. And how many in the states?

[00:04:19] John Salak: Okay. Why don't we know more about this? Or why is it more in, in our, in the public focus?

And that's primarily the reason, and also there happens to be a bit of a stigma around epilepsy that other conditions don't have, and so there is less awareness.

I think people are also generally afraid to talk about it, and they are, as you know, afraid of what they don't know or they are afraid of the unknown.

[00:04:55] Steve Austin: The stigma I think is more that Epilepsy is a disability that keeps you from being able to live a full life and that is not the case.

For instance, there's thoughts and prejudices around what people can and can't do which aren't necessarily true. In fact about 70 percent of people with epilepsy are completely controlled by medication, meaning they do not have seizures that you can see.

[00:05:42] Steve Austin: Yes, I think, I mean, it has been around for millennia, actually. I think what it was, Hippocrates called it the sacred disease, primarily because there was a stigma that individuals who had epilepsy had seizures and which shake, and there was a feeling that they were possessed by demons. And so historically it's always had a stigma.

People don't think about demonic possession right now, but there is still a stigma.

[00:06:29] Steve Austin: I think the best way to describe it is because there are so many different types of seizures, types of epilepsy.

[00:06:35] Steve Austin: It's generally a loss of voluntary control

[00:06:39] Steve Austin: physical function. That could be shaking of your body. It could be something like staring and not being able to respond.

And sometimes people remember that they had a seizure and sometimes people don't even remember. And so they have to have someone tell them they had a seizure.

[00:07:03] Steve Austin: Yeah, I mean, really, again, it all depends on the seizures. But there are people, it's called a post ictal state, where post ictal means after the seizure. And it essentially, you can be exhausted. You can't be tired depending on the type of seizure you have. For instance, the people who stare into space and don't know and don't respond to you can't hear you didn't even know they had a seizure. It's like it didn't happen, but to them, basically, they're out of sorts. So there is side effects after a seizure. For the most part, there is no pain unless You say you fall, for instance,

[00:07:55] Steve Austin: But yeah, really, again, really very much Every person who has epilepsy, it's unique to them. And so that's what makes it so hard to diagnose and so hard to treat is that there are so many different types of epilepsy and everyone has a different type. There's no like someone who has the same type of epileptic seizures that I have has very different experiences with them than I do. And so it makes it very hard for doctors to treat, and also very hard for medical researchers to identify exactly the cause.

[00:08:35] Steve Austin: Well, I was diagnosed and had my first seizure. We knew it was a seizure when I was 12. The condition or the cause was properly, identified in the early 2000s as basically mis formed neurons in my brain, which means it happened in the womb. So it's a basically, likely a mutation of some type, and it didn't really manifest itself until during puberty, which is common for the chemical changes in the body trigger epilepsy.

[00:09:16] Steve Austin: Yes, it was diagnosed right away because doctors had tools and they still do have many tools to diagnose epilepsy. The most common one is basically it's the EEG. It's electroencephalogram And can measure the brain waves and identify if you have multiple seizures.

Because in order to be diagnosed with epilepsy, you have to have more than one seizure within a 24 hour period.

[00:09:44] Steve Austin: Yes. So the initial treatment was medication and it did work Now that changed later in life.

[00:09:55] Steve Austin: Well, basically, I tolerated the medication to a certain extent, it didn't work any longer, so they had to switch the medications. And when you're on multiple medications, there's actually a name for that, it's called refractory epilepsy.

So if You are on multiple medications, and they still aren't controlling the epilepsy, then it's refractory. And that is my case.

[00:10:43] Steve Austin: No, it's, I wouldn't say it was uneventful. I do have seizures on a regular basis. For me, it's actually multiple times a day and I don't even realize I'm having the seizures because they're happening And they tend to happen at night, And also the medication has side effects. They all do.

And those side effects are also can hinder you. So for instance, because I have multiple seizures, I can't drive because there's a law in the state I live in and in most that you need to go a certain number of months without seizures in order to drive. And also, a trigger for my epilepsy, for my seizures, is body temperature, which means I can't vigorously exercise.

So there are certain things in life I can't do. And that is the most troubling thing about epilepsy for quite a few people is that it does hinder you from doing certain things. But in terms of being a chance your second question in terms of being afraid of having a seizure most people who have epilepsy, not all, but quite a few are able to identify a seizure is coming on before they have it.

It's called an aura where you get a sense that there is going to be a seizure. When I do feel that way, I make sure that I'm in a safe space, say a sofa or in a chair with arms, basically in a place where I know there's no chance at all that I could ever fall.

If I'm in a meeting at work, for instance, say like a conference table, and I have a seizure, you don't, wouldn't necessarily know I'm having it unless you knew what to look for. So I'm actually, much more fortunate than many people, which is why I find it so important to support research so that no one ever has to go through anything like this.

[00:12:40] Steve Austin: Now, cause and are two different things, but yes, we know some of the causes But I spent about half of people, more than half of people, I believe we don't know the cause. So, there are still things that are not well known, not well understood. However, a cause that is known is, like in my case, genetic mis form cells or say brain trauma can cause epilepsy.

So if you get in a car accident or say you're in the military and you're unfortunate enough to be shot in the head, for instance, that can cause epilepsy. So any type of trauma to the brain. So there are certain causes that are known. Now, they're not necessarily pleasant causes, but there are causes that are known.

[00:13:41] Steve Austin: There are some. I would recommend going to the Cure Epilepsy website, cureepilepsy.

[00:13:47] Steve Austin: and all of the information is there. It is very important that the general community be educated on epilepsy also, because It's likely that you know someone with epilepsy. Even if you think you don't, you likely do.

Because 70 percent of people, it is controlled by medication, meaning they don't have seizures. So there's a chance that Your friends or colleagues have epilepsy and it's just controlled because 1 in 26 Americans is quite a few people and depending on how many people you interact with there's definitely a chance that Someone knows someone who has epilepsy.

[00:14:31] Steve Austin: Yes, well, there are some cases where it's not properly diagnosed and that is a bit of a problem that Usually there are rare version of epilepsy that doctors have difficulty diagnosing because you're seeing a pediatrician, for instance, as a child. The pediatrician doesn't understand that rare epilepsy, and so educating those pediatricians is also very important.

There are specialists and even some of the specialists don't know some of the things they should know because it is so rare. Now, for most people, there are several methods for diagnosing epilepsy. One of them I mentioned and diagnosing epilepsy is much easier than identifying the cause. If that makes any sense.

[00:15:20] Steve Austin: Whether or not we know the cause, the triggers can be some external thing. A very common triggers are caffeine, for instance, alcohol even flashing lights or flickering lights, say, through video games can trigger seizures in some people. So are common ones. There are others that aren't so common, yeah, those It's important to work on identifying your triggers, because can yeah. so you can just stay away from them.

[00:16:00] Steve Austin: Yeah, for instance, if the flickering light problem is something trigger and playing video games on your phone could be, I suppose. However, the use of a cell phone in itself, I don't think that is common at all.

[00:16:26] Steve Austin: Most of the medications have some type of depressive side effects. Brain frog as a side effect. They very tired. They can also limit your lifestyle, for instance. they can be very hard to tolerate. sometimes people stop taking the medication because they can't tolerate the side effects, which is unfortunate because the medication works to control the seizures, but it really makes people's lives much harder.

Some doctors have trouble with patients taking their medication on time because the patients dislike the side effects so much.

[00:17:15] Steve Austin: I wouldn't say it necessarily, I think it's more it is associated with other medical conditions. For you could be more likely to get epilepsy if you have other types of medical conditions.

Or, some other medical conditions could cause seizures, even though they don't cause epilepsy. For instance, a brain tumor could cause a seizure.

But it's not epilepsy, it's just the brain tumor caused a seizure.

[00:17:54] Steve Austin: I'd say the population is aging in many countries, we are seeing an increased prevalence, but generally it's not a significant number, yet.

[00:18:16] Steve Austin: Yes, I would say that's correct. I would say it affects very young children to a large degree, and then decreases in prevalence among young adults and middle aged adults, and then you see an increase in prevalence among older adults.

[00:18:40] Steve Austin: Yes, there's no evidence that your ethnicity or gender are a factor.

[00:18:54] Steve Austin: Currently the majority of research is resulting in advanced treatments. But you can consider surgery that removes those, the cells in the brain that are causing epilepsy and the seizure stop, you might consider that a cure.

[00:19:18] Steve Austin: Well, certain types of epilepsy are more operable than others Because If it affects the entire brain, it's harder to solve with surgery versus if it's very focal, meaning it only affects a very specific part of the brain, then maybe it is more operable.

[00:19:45] Steve Austin: I say over the past several decades, it's advanced quite a bit, but we have much further to go, and that's why it's important that we invest in medical research for epilepsy specifically because it is one of the more underfunded types of research on a per patient basis because it is so prevalent in this country compared to other neurological disorders, such as not to say Parkinson's isn't important, but it's not as prevalent as epilepsy.

[00:20:25] Steve Austin: I'd say, no, I think also, just the increased prevalence of medical research in general, I think definitely helped. For instance, when I was diagnosed MRIs, you know, magnetic resonance imaging for most people are familiar with MRIs. They used them to basically look at the brain as well. And, they were first commercialized right after I was diagnosed,

but they weren't very good.

Now their quality is much higher because of research.

So research can be into drugs, but can also be into medical devices such neurostimulation devices where you put electrodes on the brain or magnetic resonance imaging, or. Other types of, scanning and imaging devices.

So there are different types of therapies and different types of,

diseases and challenges. Why do you think that is? Is that just an awareness problem? We sort of touched on that earlier, but can you elaborate or speculate on why that may be occurring?

Now, I can't confirm any of those. Those are all things that are possibilities in my mind. I would like to know exactly why, but no one knows.

[00:22:29] Steve Austin: Makes it difficult Yes, to identify the cause and to treat, for sure. Because sometimes the doctors, all they can do is, try and fail with a medication. Basically, it's trial and error, because they can't be entirely sure that the medication is going to work. In fact, it, because it's worked for other patients with similar types of epilepsy it might work for you, too.

But then again, it might not, because as I mentioned before, epilepsy is unique to each individual.

[00:23:28] Steve Austin: I would say people dealing with epilepsy or even if you're a parent of a child with epilepsy, the most important thing is to be an advocate either for yourself or for your child that is definitely needed because no one else is going to advocate for you except for you or your parents. And also I think it's important to if you doubt what your doctor is doing to get a second opinion and to not hesitate to do that.

From a specialist, an epileptologist, a specific type of neurologist, sort of a specialty within a specialty. I guess they call them sub specialties.

[00:24:08] Steve Austin: They can be difficult to find because most people have a primary care physician, whether this is a pediatric or they're an adult and they'll get referred to a general neurologist. who then may or may not refer them to an epileptologist because there aren't as many of them as there are neurologists.

In places like where I live, I'm very fortunate, such as Boston, New York, say San Francisco, there is a significant medical community, but in other parts of the country there might not be.

[00:24:39] Steve Austin: That's where you might find more challenges.

[00:24:50] Steve Austin: I would say one of the largest misconceptions is, generally people have an idea in their head of what epilepsy looks like and how and what it does to someone and they tend to get this idea from say television or the movies where seizures basically shown as someone falling to the ground and shaking and that it is not true for a large number of people. So that lack of knowledge makes them afraid, which leads to the stigma, which leads unfortunately to underfunding of research in many cases.

[00:25:37] Steve Austin: Yes, I believe that actually, gene therapy is going to be one of the solutions that's going to be developed in the next five to ten years. And I think the reason for that is partly artificial intelligence. It's going to Bring a great benefit to the researchers because there's so much information that they have to sort through having artificial intelligence as a tool to help you. We'll end up with better treatments, eventually better cures.

I can't say, I can't say how long it will take eventually to fully cure epilepsy, but I think you will see dramatic improvements in the next 10 years.

[00:26:22] Steve Austin: Yeah, I would say that even though there may be benefits down the line from things like artificial intelligence, that it's important that the research into epilepsy and the neuroscience research, the medical research is still funded whether that be from the government or through organizations such as Cure Epilepsy.

So I would recommend definitely researching that and definitely learning more and considering, a donation to research.

@ And people can they make it through Cure Epilepsy directly?

[00:26:54] John Salak: Okay. And can you give us the website address and we're going to give it again later in the broadcast , but if you could give it again, that'd be great.

[00:27:09] John Salak: Okay. And that's also Cure Epilepsy, as you mentioned, is also a great source of information for people wanting to learn more about the disease and maybe how to handle it better. Correct?

[00:27:32] John Salak: Okay. Great. We appreciate you taking the time to talk to us today and we, we hope to have you back. If there are developments you want to talk about, just let us know and we'll love to do another interview with you. So Stephen Austin from Cure Epilepsy, thank you very much for joining us today.

Just visit WellWellUSA. com, go to Melton's discounts on the pull down menu, and you'll see the sign up sheet. Signing up takes seconds. But the benefits can last for years, so enjoy! All right, we've now all had our eyes opened a bit on epilepsy, its challenges and impact. So what are the takeaways? Well, it's a tough challenge right now that has no cure.

Some suffer more than others, and more support is needed to overcome all of this. But, the good news is that support and resources are out there that can help patients deal with the disease. And there are an increasing number of treatments that can help tame the seizures. Ultimately, Many of those who have epilepsy can lead normal lives.

And if Steve Austin is right, more progress is on the horizon. So this is good news. Well, that's it for this episode of What The Health. We'd like to thank Steve Austin, uh, a board member of Cure Epilepsy for all he shared. And we of course encourage anyone who wants to learn more to visit the group's website@cureepilepsy.org.

That's cure epilepsy.org. Thanks again for listening to this episode and we hope you'll join us again soon on what the Health.