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[00:00:30] John Salak: Epilepsy is a disease we almost choose to ignore. Research and support for it, and for those who suffer from it, lag behind what's given to MS, Cerebral Palsy, Parkinson's, and ALS. Why? It's unclear. Maybe because it's hard to diagnose, and sometimes it's simply hard to treat.

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.

[00:02:21] Steve Austin: Yes, welcome. Thank you. Thank you for having me.

[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

[00:02:44] Steve Austin: Yes, absolutely. Yeah. Cure Epilepsy was actually founded as CURE, Citizens United for Research in Epilepsy. They rebranded to Cure Epilepsy recently. It was founded back in the 1990s by a woman named Susan Axelrod. I don't know if you're familiar with the Axelrod family. They have a child with epilepsy and it was basically several moms got together and founded this charity because they didn't believe there was enough research or information out there or even met therapies at the time. And so things have improved over the past 25 years. Because of that.

[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.

[00:03:25] Steve Austin: Yeah, there are, there are foundations set up by different families, etc. For the most part, CURE Epilepsy is focused on funding grants to medical research. So they solicit proposals, which we review, and then we provide the grants.

[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.

[00:04:09] Steve Austin: Yeah, it's actually more like 70 million worldwide, I believe.

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

[00:04:16] Steve Austin: Over 3 million Americans. So 1 in 26.

[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?

[00:04:27] Steve Austin: Many neuroscience conditions are not as well understood as other types of conditions, because more research needs to be done.

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.

[00:04:53] John Salak: What's the stigma around it?

[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.

[00:05:18] John Salak: Hmm. Yeah. Yeah. And is this something I would assume because epilepsy has been around for centuries, I assume it's not a modern illness or disease. And I assume that in the past, this may have been considered people with epilepsy possessed other factors that, that may have led to this stigma also, or perpetuated it, or fostered it.

[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.

[00:06:10] John Salak: No, no, of course not. No, no, of course not. But I mean a carryover, of course not. If I say this correctly, suffer from epilepsy or are faced with the same thing. For someone, and it's a brain seizure but what is it like to have an epileptic episode? Can you describe that for someone or describe it to us in some way so we get a better handle?

[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] John Salak: Mm hmm.

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

[00:06:38] John Salak: Mm

[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.

[00:06:57] John Salak: Are the seizures painful, and what's it like afterwards? Are you exhausted? What are the side effects of the seizures?

[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,

[00:07:43] John Salak: Okay. Wow. And how often in your case or, I know it's going to vary from person to person, but how often would a seizure occur? And obviously, that's also whether medication is working or not,.

[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.

[00:08:27] John Salak: When did the seizures first come on for you? Was it when you were a child? Was it older? And how quickly did you seek treatment?

[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.

[00:09:08] John Salak: Okay. And from your own standpoint, how was it initially treated? I mean, was it diagnosed right away for you?

[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.

[00:09:41] John Salak: And what was the initial treatment?

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

[00:09:52] John Salak: When it changed later in life, how did it change?

[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.

[00:10:16] John Salak: What is it like to live with epilepsy? And I know that people are on medications and so it controls the outbreaks, the seizures, I guess to a certain extent, does it control them fully? And even though it varies from person to person, are you uncomfortable because you fear, or is it in the back of your mind, you could experience a seizure at any time, or pretty much under medication, for you it's a relatively uneventful, experience.

[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.

[00:12:30] John Salak: In terms of research do we know what specifically causes epilepsy or triggers it? And is the cause the same thing as a trigger?

[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.

[00:13:25] John Salak: And obviously, a genetic mutation is something that's probably congenital, you're born with it. But how many people are dealing with epilepsy because of a traumatic experience versus something they may have been born with? Are there statistics out there on that?

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

[00:13:46] John Salak: hmm.

[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.

[00:14:22] John Salak: Do you think there are a lot of people walking around with epilepsy that haven't been diagnosed or is it pretty common now it would be diagnosed?

[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.

[00:15:15] John Salak: . And what about the triggers? What might trigger an epileptic episode for someone?

[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.

[00:15:49] John Salak: Got it. Just curious have they done any research as to whether cellular phones or smart phones or computers, laptops would they also be triggers? I mean, I guess it varies by person to person, but is there

[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.

[00:16:14] John Salak: Okay. All right. You mentioned earlier side effects of medication. Most of these, or a lot of these medications have side effects. What are some of the side effects people are dealing with in terms of their medications?

[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.

[00:17:02] John Salak: Got it. Wow. Wow. Wow. What a two edged sword. And does epilepsy in and of itself lead to any other medical conditions or create a greater risk of developing other medical conditions?

[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.

[00:17:41] John Salak: Got it. Are the number of people or the percentage of people growing who are facing epilepsy or is it fairly consistent at the one in 26 in the States or the number worldwide?

[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.

[00:18:06] John Salak: Yeah. All right. And epilepsy tends to affect older people as well or more mature adults than younger adults. Is that correct?

[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.

[00:18:31] John Salak: And any indication as to whether it affects certain demographic or ethnic groups, men versus women, or beyond just the young and the old it's pretty much consistent.

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

[00:18:45] John Salak: Okay. All right. Where are we at in terms of treatments cures. Can epilepsy be cured or is it can just be treated?

[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.

[00:19:09] John Salak: Right. But that's a pretty drastic question. response, I guess. Are a number of people seeking that sort of treatment or that sort of approach to their condition?

[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.

[00:19:34] John Salak: Okay. And so where are we in terms of development and research and that sort of thing? I know that you stressed how important It's important it is that awareness of epilepsy grows.

[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.

[00:20:14] John Salak: Right. What brought about the developments in the last few decades? Is that just a general enhancement in medical research? Or was there something that triggered the improvements in treatment and research?

[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,

[00:21:14] John Salak: Right. Mm hmm. That, yeah, just naturally progressed. You would reference and this is something that Cure Epilepsy also references on their site, that this disease affects more people than multiple sclerosis, cerebral palsy, Parkinson's, and ALS combined, yet receives fewer federal dollars per patient than these other medical.

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?

[00:21:45] Steve Austin: Yeah, that's a really good question. I think a lot of us with epilepsy would actually like to know the answer to that. Heh. heh. But it's likely a combination of factors Including that epilepsy is so varied and complex and not well understood. Drug companies choose what to find based on those factors among others, and frankly, there is still some stigma around epilepsy, translates into less funding of research, potentially.

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.

[00:22:17] John Salak: Yeah. And part of the challenge, as you mentioned, that it can be not necessarily hard to diagnose, but it can be so varied that it may be, does that make it difficult to treat because it's so varied?

[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.

[00:23:00] John Salak: Right. Right. And that certainly probably puts a damper on incentives for pharmaceutical companies to address this, as you kind of speculated earlier. If you're someone with epilepsy, and obviously you are someone with epilepsy, but speaking to others, What would you tell them on both sort of a medical and a social or personal terms and how best to deal with it? What advice can you give people dealing with epilepsy?

[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.

[00:24:01] John Salak: Are these specialists difficult to find? I mean, are there enough of them out there, or are they far and few between?

[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.

[00:24:38] John Salak: Got it.

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

[00:24:42] John Salak: What's the biggest misconception around epilepsy, both from the public and people who specifically suffer from it?

[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.

[00:25:22] John Salak: And what about the future? What do we see for the future in the next five or 10 years? And I know you're not a medical research expert or medical researcher, but you're certainly deeply involved in this from both the personal and an organizational level. Do you see strides being made?

[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.

[00:26:13] John Salak: All right. There's so much more we could go into. Is there anything else you wanted to tell the listeners acknowledge in terms of epilepsy and what we need to be thinking about.

[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?

[00:26:51] Steve Austin: Yes, they can go to the website and make it 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.

[00:27:01] Steve Austin: Sure. It's Cure Epilepsy. C U R E. E P I L E P S Y dot org.

[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?

[00:27:19] Steve Austin: Yes, correct. There actually is a whole section of the website devoted to helping anyone reading the website better understand epilepsy and how it is diagnosed, how it's treated, what it exactly is, how it manifests itself, etc.

[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.

[00:27:49] Steve Austin: Thank you, John. It's been a pleasure.

[00:27:55] John Salak: Before we dish out some health hacks and insights, we want to remind everyone, again, of the hundreds of exclusive discounts our WellWellBeing community enjoys. These include everything from fitness and athletic equipment to personal care products, organic foods and beverages, and more. Now, joining our WellWellBeing community is easy and free.

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.