1 00:00:00,120 --> 00:00:03,160 Speaker 1: Today's podcast was made possible by our friends at Leavinova, 2 00:00:03,200 --> 00:00:06,880 Speaker 1: a company committed to driving awareness of epilepsy already. 3 00:00:07,000 --> 00:00:11,080 Speaker 2: And this is the Daily This is the Daily OS. 4 00:00:11,080 --> 00:00:22,079 Speaker 1: Oh, now it makes sense. Good morning and welcome to 5 00:00:22,120 --> 00:00:27,480 Speaker 1: the Daily OS. I'm Emma Gillespie. March is Epilepsy Awareness Month. Now, 6 00:00:27,560 --> 00:00:31,680 Speaker 1: epilepsy effects around two hundred and fifty thousand Australians, so 7 00:00:32,000 --> 00:00:35,120 Speaker 1: chances are someone in your life has it, and yet 8 00:00:35,120 --> 00:00:37,840 Speaker 1: for many of us, our only real reference point for 9 00:00:37,880 --> 00:00:42,320 Speaker 1: epilepsy is probably a dramatic seizure scene from a TV show, which, 10 00:00:42,720 --> 00:00:47,000 Speaker 1: as we'll hear today, isn't exactly accurate. I'm sitting down 11 00:00:47,120 --> 00:00:50,479 Speaker 1: with Carol Island for today's deep dive. She is the 12 00:00:50,520 --> 00:00:54,400 Speaker 1: CEO at Epilepsy Action Australia and she's going to answer 13 00:00:54,480 --> 00:00:57,960 Speaker 1: all the questions that people genuinely have about epilepsy but 14 00:00:58,080 --> 00:01:01,480 Speaker 1: maybe haven't known how to ask, from what a seizure 15 00:01:01,520 --> 00:01:03,840 Speaker 1: looks like to how you can support a mate who 16 00:01:03,880 --> 00:01:06,280 Speaker 1: has it, to what it means to live with a 17 00:01:06,319 --> 00:01:13,240 Speaker 1: condition that most people can't see. Before we get into 18 00:01:13,240 --> 00:01:15,080 Speaker 1: the chat, I wanted to let you know that this 19 00:01:15,120 --> 00:01:18,600 Speaker 1: conversation has been produced in partnership with Levinova as part 20 00:01:18,640 --> 00:01:22,559 Speaker 1: of Epilepsy Awareness Month. As always, TDA has independently written 21 00:01:22,600 --> 00:01:27,880 Speaker 1: and produced all editorial content for this podcast without commercial influence. Carol, 22 00:01:27,959 --> 00:01:30,400 Speaker 1: Welcome to the podcast. Thank you so much for chatting 23 00:01:30,480 --> 00:01:31,160 Speaker 1: to us today. 24 00:01:31,400 --> 00:01:35,560 Speaker 3: It's an absolute pleasure, particularly this being International Epilepsy Awareness Month. 25 00:01:35,600 --> 00:01:38,520 Speaker 1: Emma, let's start with the basics, because I know a 26 00:01:38,560 --> 00:01:41,520 Speaker 1: lot of our audience might have a general sense of 27 00:01:41,560 --> 00:01:44,679 Speaker 1: what epilepsy is, but probably not a deep one. So 28 00:01:44,800 --> 00:01:48,080 Speaker 1: how would you describe it to someone who's never really 29 00:01:48,200 --> 00:01:50,280 Speaker 1: thought about epilepsy much before? 30 00:01:50,720 --> 00:01:53,320 Speaker 3: If we could break this down a little bit, because 31 00:01:53,400 --> 00:01:57,360 Speaker 3: I think we're talking about epilepsy but also seizures. Epilepsy 32 00:01:57,440 --> 00:02:00,760 Speaker 3: is a disease of the brain, and it's carricterized by 33 00:02:00,800 --> 00:02:04,480 Speaker 3: the tendency to have recurrence seizures. It's not contagious in 34 00:02:04,520 --> 00:02:07,680 Speaker 3: any way, and a lot of people with epilepsy prefer 35 00:02:07,720 --> 00:02:11,120 Speaker 3: to speak of it as a condition rather than a disease. 36 00:02:11,680 --> 00:02:15,160 Speaker 3: Now come to seizures, than if epilepsy has recurrence seizures. 37 00:02:15,160 --> 00:02:18,920 Speaker 3: A seizure is a temporary disruption to the electrical activity 38 00:02:18,919 --> 00:02:22,680 Speaker 3: in the brain, and this can cause changes in awareness 39 00:02:23,200 --> 00:02:28,560 Speaker 3: movement behavior and individuals considered to have epilepsy usually when 40 00:02:28,560 --> 00:02:33,119 Speaker 3: they have two or more seizures and about twenty four 41 00:02:33,120 --> 00:02:36,239 Speaker 3: hours apart, and they're not provoked. In other words, they're 42 00:02:36,240 --> 00:02:39,240 Speaker 3: not caused by some other thing like high temperature or 43 00:02:39,320 --> 00:02:43,280 Speaker 3: alcohol withdrawal or something like that. So about two in 44 00:02:43,360 --> 00:02:46,880 Speaker 3: three people living with epilepsy could successfully manage their seizures, 45 00:02:47,360 --> 00:02:51,840 Speaker 3: but one in three Australians are diagnosed with drug resistant epilepsy. 46 00:02:52,040 --> 00:02:55,160 Speaker 3: It's a type of epilepsy where a person doesn't achieve 47 00:02:55,280 --> 00:03:00,799 Speaker 3: seizure control after two appropriately chosen anti seasion medications. 48 00:03:01,440 --> 00:03:04,960 Speaker 1: Just how common is epilepsy in Australia? Do you think 49 00:03:05,000 --> 00:03:07,560 Speaker 1: that its prevalence might actually surprise people? 50 00:03:08,200 --> 00:03:12,840 Speaker 3: I think yes, it possibly does. It's not uncommon. Epilepsy is, 51 00:03:12,840 --> 00:03:16,239 Speaker 3: in fact one of the most common neurological conditions in Australia. 52 00:03:16,320 --> 00:03:18,960 Speaker 3: And the estimation now is two hundred and sixty six 53 00:03:19,160 --> 00:03:23,279 Speaker 3: thousand Australians or one percent of the population living with epilepsy. 54 00:03:23,320 --> 00:03:26,760 Speaker 3: And I mentioned drug resistant epilepsy, so around eighty six 55 00:03:26,880 --> 00:03:31,120 Speaker 3: thousand Australians living with drug resistant epilepsy. You know, to 56 00:03:31,160 --> 00:03:34,400 Speaker 3: put that in a slightly different context, approximately one in 57 00:03:34,480 --> 00:03:38,440 Speaker 3: twenty five Australians will develop epilepsy in their lifetime. 58 00:03:38,840 --> 00:03:41,160 Speaker 1: I want to get into a bit of myth busting 59 00:03:41,360 --> 00:03:44,160 Speaker 1: with you, Carol, some of the stuff that people get wrong. 60 00:03:44,760 --> 00:03:48,360 Speaker 1: What's the biggest misconception that you come across when it 61 00:03:48,400 --> 00:03:49,520 Speaker 1: comes to epilepsy. 62 00:03:50,080 --> 00:03:53,720 Speaker 3: There are many misconceptions I think. Look, one of the 63 00:03:54,160 --> 00:03:58,240 Speaker 3: really common ones is that epilepsy is when you have 64 00:03:58,560 --> 00:04:01,400 Speaker 3: a grand mule seizure. Used to be called it's now 65 00:04:01,440 --> 00:04:04,720 Speaker 3: called tonic chlonic seizure, but you know, the convulsive seizures. 66 00:04:04,960 --> 00:04:08,840 Speaker 3: Somebody falls to the ground, they're shaking, they lose consciousness, 67 00:04:08,880 --> 00:04:12,560 Speaker 3: and because the media often portrays epilepsy in that way, 68 00:04:12,760 --> 00:04:16,680 Speaker 3: people often think that that, in fact, is what epilepsy is. 69 00:04:17,320 --> 00:04:20,200 Speaker 3: Another one around seizure type is flashing lights. A lot 70 00:04:20,200 --> 00:04:23,760 Speaker 3: of people think that flashing lights trigger seizures, but in 71 00:04:23,800 --> 00:04:26,680 Speaker 3: fact it's a very small percentage of people that have 72 00:04:26,760 --> 00:04:30,440 Speaker 3: seizures triggered by flashing lights. There's a misconception that epilepsy 73 00:04:30,480 --> 00:04:34,120 Speaker 3: is a psychiatric condition. Now it's a neurological disorder. It's 74 00:04:34,160 --> 00:04:37,080 Speaker 3: not a psychiatric condition, though it may co occur with 75 00:04:37,200 --> 00:04:40,920 Speaker 3: mental health issues. And another thought would be that it 76 00:04:40,960 --> 00:04:44,800 Speaker 3: only happens to children. Only children have epilepsy. Now, epilepsy 77 00:04:44,839 --> 00:04:47,000 Speaker 3: can begin at any age, and in fact does. 78 00:04:47,560 --> 00:04:50,720 Speaker 1: When we talk about types of epilepsies, types of seizures. 79 00:04:50,760 --> 00:04:53,440 Speaker 1: You've touched on some of this a little bit there already, 80 00:04:53,480 --> 00:04:56,640 Speaker 1: but it's clearly not a one size fits all. So 81 00:04:56,680 --> 00:05:00,680 Speaker 1: how much variation is there across the condition? You know, 82 00:05:00,720 --> 00:05:03,920 Speaker 1: are we talking about different types of epilepsy? How many 83 00:05:03,920 --> 00:05:05,880 Speaker 1: different types of seizures? 84 00:05:06,400 --> 00:05:09,240 Speaker 3: Yeah, all of the above. There are multiple different types 85 00:05:09,279 --> 00:05:14,200 Speaker 3: of epilepsy and epilepsy syndromes and seizures. And not all 86 00:05:14,279 --> 00:05:18,000 Speaker 3: seizures involve loss of consciousness and convulsion, as I've mentioned, 87 00:05:18,040 --> 00:05:21,080 Speaker 3: so some have more subtle features like it might be 88 00:05:21,120 --> 00:05:25,640 Speaker 3: a vacant stare, it might be some confusion, or some repetitive, 89 00:05:25,720 --> 00:05:31,800 Speaker 3: unusual repetitive behaviors chewing, tugging at your clothes, fidgeting, wandering. 90 00:05:32,040 --> 00:05:35,720 Speaker 3: There are actually more than forty different types of seizures 91 00:05:35,720 --> 00:05:38,520 Speaker 3: and syndromes, and people can also have more than one 92 00:05:38,839 --> 00:05:42,240 Speaker 3: seizure type. Then you come down to individual differences, of course, 93 00:05:42,279 --> 00:05:46,360 Speaker 3: and every person's experience with epilepsies is different. You can 94 00:05:46,360 --> 00:05:49,960 Speaker 3: also go back to causes the many different causes of epilepsy, 95 00:05:50,120 --> 00:05:55,960 Speaker 3: so head trauma, infections, infections of the central nervous system, tumors, strokes, 96 00:05:56,160 --> 00:06:02,200 Speaker 3: brain abnormalities at birth, either before birth, during birth, developmental 97 00:06:02,240 --> 00:06:05,800 Speaker 3: and genetic conditions, so many, many different kinds. And interesting 98 00:06:05,839 --> 00:06:08,080 Speaker 3: thing though, is about half of all people will ever 99 00:06:08,160 --> 00:06:10,000 Speaker 3: know the exact cause of their epilepsy. 100 00:06:10,560 --> 00:06:13,000 Speaker 1: What are some of the impacts for a person living 101 00:06:13,040 --> 00:06:16,080 Speaker 1: with epilepsy, you know, the impacts on their everyday lives, 102 00:06:16,320 --> 00:06:19,679 Speaker 1: their mental health, things like driving a car, maybe tasks 103 00:06:19,720 --> 00:06:22,640 Speaker 1: that many of us take for granted. What are those 104 00:06:22,720 --> 00:06:25,080 Speaker 1: kind of hidden impacts that we might not see or 105 00:06:25,120 --> 00:06:27,599 Speaker 1: think about, but that can really impact their lives. 106 00:06:28,040 --> 00:06:32,360 Speaker 3: Yeah, when you think about epilepsy and its unpredictability itself, 107 00:06:32,800 --> 00:06:35,200 Speaker 3: I don't know when that next seizure is coming. I 108 00:06:35,240 --> 00:06:38,200 Speaker 3: don't know whether I'm going to lose consciousness. I may fall, 109 00:06:38,279 --> 00:06:42,279 Speaker 3: I may hurt myself. Certainly, epilepsy is what I would 110 00:06:42,279 --> 00:06:45,760 Speaker 3: call a spectrum disorder. For some people, it might have 111 00:06:45,880 --> 00:06:49,560 Speaker 3: a relatively minor impact on day to day life, but 112 00:06:49,600 --> 00:06:52,760 Speaker 3: they've still got the uncertainty and the fear. For others, though, 113 00:06:52,760 --> 00:06:56,240 Speaker 3: it impacts every aspect of their life. You know, their independence. 114 00:06:56,320 --> 00:07:00,719 Speaker 3: You mentioned driving, just swimming alone without you know, without 115 00:07:00,760 --> 00:07:03,400 Speaker 3: taking care that someone is always with you. We do 116 00:07:03,520 --> 00:07:06,080 Speaker 3: know there's a higher rate of anxiety and depression for 117 00:07:06,160 --> 00:07:10,760 Speaker 3: people living with epilepsy. It can affect your opportunity to 118 00:07:10,840 --> 00:07:14,080 Speaker 3: be in employment, for children at school, to participate in 119 00:07:14,120 --> 00:07:17,440 Speaker 3: all of the activities. It just does reach out to 120 00:07:17,560 --> 00:07:21,760 Speaker 3: every aspect of life, and it's particularly difficult for those 121 00:07:21,760 --> 00:07:24,720 Speaker 3: people that have the more complex epilepsies and difficult to 122 00:07:24,760 --> 00:07:25,800 Speaker 3: treat epilepsies. 123 00:07:26,160 --> 00:07:28,360 Speaker 1: Now that we understand a little bit more about what 124 00:07:28,360 --> 00:07:31,440 Speaker 1: it might be like for those living with epilepsy, I 125 00:07:31,480 --> 00:07:34,200 Speaker 1: want to talk to you about how we can support 126 00:07:34,360 --> 00:07:37,240 Speaker 1: those people. So, if someone, for example, has a seizure 127 00:07:37,280 --> 00:07:39,920 Speaker 1: in front of you, how should you respond, What can 128 00:07:39,960 --> 00:07:41,000 Speaker 1: you do to help? 129 00:07:41,480 --> 00:07:44,400 Speaker 3: Sure we're very often they're talking about where it is 130 00:07:44,440 --> 00:07:47,440 Speaker 3: a convulsive seizure, But whether it is or not, I 131 00:07:47,440 --> 00:07:50,360 Speaker 3: mean basically, what you're attempting to do is keep the 132 00:07:50,400 --> 00:07:54,360 Speaker 3: person safe while the seizure runs its course. It's not 133 00:07:54,560 --> 00:07:57,720 Speaker 3: always necessary to call an ambulance, particularly if you know 134 00:07:57,760 --> 00:08:01,640 Speaker 3: the person, you know their seizure types. It isn't necessary 135 00:08:01,720 --> 00:08:05,080 Speaker 3: sometimes staying calm if the person's having some sort of 136 00:08:05,080 --> 00:08:08,400 Speaker 3: a convulsive seizure or even even a different sort of seizure, 137 00:08:08,400 --> 00:08:11,960 Speaker 3: and you recognize as it has such time. It sounds funny, 138 00:08:11,960 --> 00:08:14,960 Speaker 3: but that's pretty important to know to tell people later. 139 00:08:15,200 --> 00:08:17,840 Speaker 3: You protect the person's head if it's a convulsive seizure, 140 00:08:17,960 --> 00:08:21,320 Speaker 3: make them safe, put their head on something soft, a jacket, 141 00:08:21,360 --> 00:08:23,720 Speaker 3: a bag, anything that's around, and you make sure they're 142 00:08:23,760 --> 00:08:26,360 Speaker 3: not going to hurt themselves by objects that are in 143 00:08:26,400 --> 00:08:30,679 Speaker 3: the way. You don't restrain them loose and tight clothing. 144 00:08:30,720 --> 00:08:32,920 Speaker 3: It's the sort of thing you would do with other 145 00:08:32,960 --> 00:08:36,040 Speaker 3: first aid. Turn them on to their side gently, especially 146 00:08:36,080 --> 00:08:39,000 Speaker 3: once the shaking stops if it's a convulsive seizure, and 147 00:08:39,160 --> 00:08:43,079 Speaker 3: stay with them until they're fully awakened and aware. If 148 00:08:43,120 --> 00:08:46,120 Speaker 3: a seizure convulsive seizure does last more than five minutes, 149 00:08:46,640 --> 00:08:49,760 Speaker 3: or another seizure starts straight after one, and it's really 150 00:08:49,840 --> 00:08:52,520 Speaker 3: important to call an ambulance, of course, or if they're 151 00:08:52,559 --> 00:08:54,760 Speaker 3: injured in any way, or if it's the first seizure 152 00:08:54,800 --> 00:08:55,320 Speaker 3: you see. 153 00:08:55,720 --> 00:08:59,560 Speaker 1: Is there anything people do instinctively when they're maybe trying 154 00:08:59,600 --> 00:09:02,760 Speaker 1: to help someone who's having a seizure that can actually 155 00:09:02,840 --> 00:09:04,160 Speaker 1: make things worse. 156 00:09:04,440 --> 00:09:06,839 Speaker 3: My goodness, yes, And we go back to some of 157 00:09:06,440 --> 00:09:10,439 Speaker 3: the myths here from many, many years ago. It was 158 00:09:10,480 --> 00:09:13,480 Speaker 3: always said, put something in the person's mouth. That's what 159 00:09:13,520 --> 00:09:17,199 Speaker 3: I was thinking, hmm, you'll stop them from swallowing their tongue. 160 00:09:17,320 --> 00:09:22,120 Speaker 3: It is absolutely wrong and extraordinarily dangerous to put something 161 00:09:22,120 --> 00:09:25,840 Speaker 3: in somebody's mouth. They physically cannot swallow their tongue. If 162 00:09:25,880 --> 00:09:27,960 Speaker 3: you put something in their mouth, there's that risk of 163 00:09:28,040 --> 00:09:31,480 Speaker 3: breaking their teeth, blocking their airway, choking, or even getting 164 00:09:31,480 --> 00:09:32,360 Speaker 3: bitten yourself. 165 00:09:32,400 --> 00:09:36,280 Speaker 1: To be quite honest, what's something you wish people around 166 00:09:36,280 --> 00:09:39,880 Speaker 1: someone with epilepsy understood better? You know, whether that's their family, 167 00:09:39,960 --> 00:09:43,400 Speaker 1: their friends, their colleagues. How can we genuinely make a 168 00:09:43,440 --> 00:09:45,239 Speaker 1: difference and be more supportive. 169 00:09:45,880 --> 00:09:49,319 Speaker 3: Seizure first aid and just a weakness is super important, 170 00:09:49,360 --> 00:09:52,160 Speaker 3: such as darming yourself with recognizing a seizure. But I 171 00:09:52,720 --> 00:09:57,000 Speaker 3: guess for me, it's knowing that people with epilepsy and 172 00:09:57,040 --> 00:10:00,000 Speaker 3: their cares and those around them know that there's experts, 173 00:10:00,120 --> 00:10:04,480 Speaker 3: medical service available, and knowing that support is available In 174 00:10:04,600 --> 00:10:08,960 Speaker 3: terms of support. Number of epilepsy organizations, including our own, 175 00:10:09,120 --> 00:10:12,840 Speaker 3: with funding from the Australian government, Epilepsy Action operates the 176 00:10:12,960 --> 00:10:16,040 Speaker 3: National Epilepsy Line, a phone line, but it also has 177 00:10:16,200 --> 00:10:19,719 Speaker 3: number of online access points as well, and this incorporates 178 00:10:19,760 --> 00:10:24,760 Speaker 3: the only national epilepsy telehealth support service, and it has 179 00:10:24,840 --> 00:10:27,720 Speaker 3: registered nurses at the end of the line five days 180 00:10:27,760 --> 00:10:31,319 Speaker 3: a week and no questions too small. We often hear 181 00:10:31,360 --> 00:10:35,240 Speaker 3: that neurologists are extraordinarily busy in those questions popp into 182 00:10:35,240 --> 00:10:38,440 Speaker 3: your head after you've seen a neurologists. So our National 183 00:10:38,440 --> 00:10:42,040 Speaker 3: Epilepsy Line's pretty important to just call and know you 184 00:10:42,080 --> 00:10:45,720 Speaker 3: can speak to our trained epilepsy nurse. It's one three 185 00:10:45,800 --> 00:10:49,920 Speaker 3: hundred three seven four five three seven or one three 186 00:10:50,000 --> 00:10:53,320 Speaker 3: hundred epilepsy. The other thing I would say is, unfortunately 187 00:10:53,360 --> 00:10:57,240 Speaker 3: there is still some stigma societal discrimination linked with epilepsy, 188 00:10:57,280 --> 00:10:59,679 Speaker 3: and we think that's largely due to a lack of 189 00:10:59,679 --> 00:11:02,880 Speaker 3: a week winess and you know those myths and misinformation, 190 00:11:03,320 --> 00:11:06,560 Speaker 3: So you know, stigma or social consequence for epilepsy can 191 00:11:06,600 --> 00:11:09,600 Speaker 3: often be as bad or worse than the disorder itself. 192 00:11:09,760 --> 00:11:14,599 Speaker 3: So epilepsy action certainly involved in constantly trying to raise awareness. 193 00:11:14,679 --> 00:11:17,680 Speaker 3: You know, we have a current purple Up campaign that's 194 00:11:17,720 --> 00:11:21,920 Speaker 3: operating as part of our monthly March monthly awareness program. 195 00:11:22,240 --> 00:11:25,199 Speaker 1: Carol, thank you so much for joining us and sharing 196 00:11:25,320 --> 00:11:26,719 Speaker 1: that important information. 197 00:11:27,240 --> 00:11:29,920 Speaker 3: That is my sheer pleasure and thank you for helping 198 00:11:30,000 --> 00:11:30,720 Speaker 3: raise awareness. 199 00:11:31,120 --> 00:11:34,920 Speaker 1: That's it for today's episode. Epilepsy Awareness Month is all 200 00:11:35,000 --> 00:11:38,960 Speaker 1: about starting the conversations that don't happen often enough. So 201 00:11:39,679 --> 00:11:43,440 Speaker 1: if you learned something from this conversation, please feel free 202 00:11:43,480 --> 00:11:45,320 Speaker 1: to share it with a friend. We'll be back in 203 00:11:45,360 --> 00:11:48,840 Speaker 1: your ears with another deep dive soon. Until then, take care. 204 00:11:53,000 --> 00:11:55,280 Speaker 2: My name is Lily Madden and I'm a proud Aarunda 205 00:11:55,520 --> 00:11:59,959 Speaker 2: Bunjelung Cargotin woman from Gadigal Country. The Daily Oz ignore 206 00:12:00,400 --> 00:12:02,559 Speaker 2: that this podcast is recorded on the lands of the 207 00:12:02,600 --> 00:12:06,120 Speaker 2: Gadigal people and pays respect to all Aboriginal and Torres 208 00:12:06,160 --> 00:12:09,080 Speaker 2: Strait Island and nations. We pay our respects to the 209 00:12:09,080 --> 00:12:11,880 Speaker 2: first peoples of these countries, both past and present. 210 00:12:15,000 --> 00:12:17,480 Speaker 1: Before you go, here is a quick message from today's 211 00:12:17,480 --> 00:12:21,000 Speaker 1: sponsor Leave it over. March is Epilepsy Awareness Month, a 212 00:12:21,080 --> 00:12:25,120 Speaker 1: time to better understand epilepsy and drug resistant epilepsy, a 213 00:12:25,160 --> 00:12:28,079 Speaker 1: form of epilepsy where about one in three Australians don't 214 00:12:28,120 --> 00:12:33,079 Speaker 1: achieve seizure freedom after trying two appropriately chosen anti seizure medications. 215 00:12:33,280 --> 00:12:36,400 Speaker 1: It's a challenging reality for many families, and awareness is 216 00:12:36,440 --> 00:12:39,640 Speaker 1: an important step towards support and better outcomes. Thanks for 217 00:12:39,679 --> 00:12:41,640 Speaker 1: listening and for being part of the conversation.