Epilepsy Action Australia and SUDEP Action Partnership [transcript][audio]

Guest: Carol Ireland

Presenter: Tabetha Moreto

Guest Bio: Carol Ireland is the CEO and Managing Director of Epilepsy Action Australia. She is a strong and active advocate for people living with epilepsy. Carol has held a variety of executive positions and senior management roles in service delivery, marketing and fundraising. She currently sits on the Australian Advisory Council on the Medicinal Use of Cannabis, the Advisory Board of the Lambert Initiative for Cannabinoid Therapeutics at the University of Sydney, and the Steering Committee for the NSW Government’s Paediatric Epilepsy Trials (Medicinal Cannabis Research). Carol is a strong and active advocate for people living with epilepsy.

Segment Overview: In today’s interview, Carol Ireland talks about the new partnership that her organization has forged with SUDEP Action in order to tackle epilepsy and SUDEP which is also known as sudden unexpected death in epilepsy. She also elaborates on the causes and available treatments for epilepsy.

TRANSCRIPT – Epilepsy Action Australia

Tabetha Moreto: Hello everyone. Welcome to Health Professional Radio. I’m your host for today, Tabetha Moreto. Our guest today is Carol Ireland, CEO and Managing Director of Epilepsy Action Australia. She is a strong and active advocate for people living with epilepsy. Today we’re going to talk about how Australians and health professionals are unaware of risk of epilepsy related deaths and the new partnership forged between Epilepsy Action Australia and SUDEP Action. Without further ado, welcome to the show Carol. It’s a pleasure to have you here.

Carol Ireland: Thanks so much, Tabetha. It’s very important to be raising some awareness of these issues.

T: Yes, my pleasure. So Carol, can you please tell the audience more about yourself and your organization?

C: Sure. So I’ve actually been working with Epilepsy Action Australia for over a decade now, about eleven years. I have a brother with epilepsy and when I joined this organization, I thought I knew all about epilepsy and I came to know that I don’t know very much at all or I didn’t. I’ve learned a lot in that last 10 years. So Epilepsy Action Australia is the largest and oldest epilepsy support organization in Australia. We’ve been assisting people in the community for some 65 years and we do a range of things. I guess the most important thing is we provide support, advice, guidance, resources to people immediately impacted by epilepsy or the parents of children with epilepsy. And we also provide training to others who need to know about epilepsy in the community like teachers, nurses, carers, sporting group, those sorts of people as well. We’re all trained in how to identify seizures, how to apply a seizure first aid, how to give emergency medication if that’s required in a particular case. Epilepsy is very, very complex. A lot of people think of it as a tonic-clonic seizure or the old grand mal seizure that you see depicted in the media. But in fact there are some 40-45 different kinds of seizures in epilepsy syndrome. And they do have different implications sometimes, different causes and require different intervention. So it’s actually a very, very complex area and we like to see ourselves as the people that have the information to help in anything to do with epilepsy.

T: I see, this sounds very interesting. And speaking of the types of epilepsy, Carol, can you please explain what are the different types of epilepsy out there?

C: Sure. As I mentioned, 40 or more different kinds of seizures and syndromes. So most people do recognize a tonic-clonic seizure or a grand mal seizure. Somebody would actually fall to the ground, lose consciousness and it’s convulsive seizure – they convulse. It might be several minutes that they’re unconscious and then slowly they’ll regain consciousness and after a period of rest they’ll get on with their lives. But there are other forms. So there is something called absence seizures. Now if you could imagine a child perhaps in school and every now and then they drift off. They might stop paying attention, literally drift off. If you were having a conversation with somebody having absence seizures, they might just stop for a few seconds, mid-sentence and then take up again. Now believe it or not, these people are actually having speeders, small what used to be called petit mal seizures and very hard to learn something new in schools, if you’re actually having these on a regular basis. The most common kind of seizure is actually a complex partial seizure or focal seizure. Now imagine if you were talking with me and I started to make very strange repetitive movements. I might be tugging at my clothes with my hand, I might start to make some funny repetitive facial movement, actually in this kind of epilepsy, which as I said is the most common – I don’t know that’s happening. I’m having seizure, appear to be conscious and you can imagine this is mistaken for anything from daydreaming, to somebody being intoxicated, somebody being very strange inverted comma and so on. So it’s a lot harder to explain those sorts of seizures rather than the ones well known. And then you’ve got the really devastating syndromes and they really are some terrible syndrome that affect children. There’s one that’s called dravet syndrome and wherein the child can be having many, many seizures and many, many seizures per day sometimes and all that activity is sort of further compromising their already compromised brains. Look, in some of the childhood epilepsy, very sadly a large proportion of the children actually don’t survive into adulthood. So there is that really devastating in epilepsy as well where it can and does take lives.

T: I see. This sounds like a very complicated or rather complex condition and also sounds very dangerous. So can you tell us Carol, how can a epilepsy be treated or managed?

C: Yes, there are a number of different ways but the frontline treatment is medication. If you were to have one seizure, you won’t be diagnosed with epilepsy but if you have a second seizure and there’s no obvious reason – in other words intoxication or very high temperature – if there’s no other obvious reason and you’ve had a second seizure you will most likely be diagnosed with epilepsy. It might take some time for the type of epilepsy to be identified and that the best treatment to be decided, but typically you’ll be given a medication. And there are different forms of medications for different types of epilepsy. So one will be prescribed and then you’d be monitored. Now for some people, at first medication may work, it may reduce seizures but certainly hasn’t cured the epilepsy, what we’re trying to do here is controlling those seizures. If that one doesn’t work there would be another medication trial and sometimes, there’s a combination of medications for the trial. So in the really tough cases, it might four or five different medications at a trial and they just fail to control the seizures. But for about 65% of people with epilepsy, medication will be the thing that will bring their seizures under control. People think that surgery is a very common treatment and surgery can be successful but not for the majority. So of all the people with epilepsy, it’s only about 1% who are suitable candidates for surgery and it’s where you can actually see a little bit of damage, a mark, a scratch – you can actually see something under the testing of something on the brain and they literally remove that part of the brain if it’s safe to do so. But as I said only about 1% of people with epilepsy. There are some others. There are some dietary treatments as well and there’s some emerging treatment including the trialling of medicinal cannabis. A range of new things always coming out but at the moment around 35% of people still really do suffer with what we call intractable epilepsy or medication resistant epilepsy.

T: It’s a good thing to know that there are several treatments available for people who have epilepsy. And now let’s talk about the risk. Who are at risk of getting epilepsy?

C: At risk of getting epilepsy? Anyone can actually get epilepsy, I mean the causes are many. So it may be that you have a genetic form of epilepsy, which is easy to identify once with gene testing, may be running in the family. It might be more than one child in the family that has epilepsy. It can be accident related. So if you’ve had a car accident and bumped your head or if you’ve been in a sporting accident and had an injury to the head, anything that injures the head can potentially injure the brain and cause epilepsy. And then there are what we call comorbidities. So for instance somebody who has another condition, let’s say a stroke or a brain tumor, there are a range of different conditions where epilepsy could occur, a morbid indication. But many, many different forms of epilepsy, many different causes. If you were to chart, it would be that the incidence of epilepsy is highest in the very young and the elderly, but obviously with accidents and the like, you can develop epilepsy at any age.

T: That’s very interesting because to tell you the truth Carol, there was a time where I thought only like a specific group of people are at risk of getting epilepsy, but thank you for explaining to me that everyone can be at risk of getting this condition.

C: Absolutely. And most of us know someone with epilepsy in our families or friends or whatever but they’re often the similarities and it’s all different kinds of epilepsy and it could happen to anyone of us. I mean the thing we say about epilepsy, it doesn’t discriminate by age or race or gender. It can happen to anyone and of course it may be that you’re in that luckier group where the epilepsy, the seizures can be controlled. But of course the risks are far greater when the seizures can’t be controlled.

T: Very well said. I agree with you, epilepsy does not discriminate. Carol, let’s talk about this new partnership between Epilepsy Action Australia and SUDEP Action. So what’s so special about this new partnership between these two organizations?

C: Well for explaining first of all, what SUDEP is, SUDEP stands for sudden unexpected deaths in epilepsy. Now most people have heard of SIDS. You would have heard of SIDS, where a young baby would pass away and there was often not an obvious cause of death. And there has been many sort of research programs into SIDS and thankfully the rate of death has gone down considerably, but SUDEP is a little bit similar, I should say. It’s where someone with epilepsy who are otherwise well, they have a diagnosis of epilepsy but they’re otherwise well. They don’t suddenly and unexpectedly and there’s no obvious cause to this. Very often it would happen during sleep, so there’s often not a witness but there’s no evidence that the person has necessarily had a seizure or anything else has happened. They’ve just passed away in their sleep most commonly. We don’t know quite why that’s the case at the moment, researchers are still investigating and they’re looking at possibilities like the effects of seizures on breathing and the heart. But you can imagine it’s an absolutely traumatic experience when this happens. It may be that it’s your partner or your child but somebody typically to the young adults. It can happen to children but typically young adults and they seem well but they just pass away in their sleep, so very traumatic. Unfortunately most of the families affected, so they’ve never heard of SUDEP. Nobody’s ever mentioned it to them until they actually lost their loved one. So as well as the grief, there’s incredible shock around the fact that this thing called SUDEP even exist. So the importance of the partnership, what we’ve done is we’ve partnered with basically the international leading organization that’s looking at SUDEP and it is SUDEP Action in the United Kingdom. And they are taking some fantastic steps to ensure research and understanding and education, because there are things that people can do to minimize risk. So the more we can get the information out there, then the better that is. So the partnership is between our organization and SUDEP Action to actually bring awareness and resources to the Australian people around SUDEP and make sure that people do know what it’s about and that they can minimize their risks.

T: Excellent news. I’m very happy to hear that your organization and SUDEP Action will also have a great impact on Australian people especially regarding this condition that like what you mentioned earlier that a lot of people don’t even know about.

C: No, that’s right. Well, I mean in Australia well I think in general it’s about one in a thousand people with epilepsy that are affected by SUDEP and in Australia that’s about a 150 deaths per year. And you might say that’s a small number but it’s too many for those families that are going through such grief and they often say, “Well, if only I knew.” There are some really key things like lifestyle factors, getting enough sleep, taking your medication exactly on time, how much medication you’re supposed to take and taking it at the exact time you should. Avoiding some triggers, it might be that late nights and alcohol might be seizure triggers. Basically, what these people need to do is manage their seizures as well as possible so that they’re reducing them, if the seizure control then the risk of SUDEP goes down considerably. And look I have to say too, it’s not all people with epilepsy that are at risk of sudden unexpected death, some syndromes, some seizure type are actually a higher risk than others. So it’s quite important to talk to some professionals about that and get the understanding of exactly where your particular type of seizure and epilepsy fits. And that’s what the partnership is about and it’s about Epilepsy Action Australia growing its resources and its knowledge and helping people in Australia.

T: Fantastic. Now before we go Carol, what is your main takeaway message to all of our listeners?

C: I think what we want people to do is be aware of SUDEP, but don’t be afraid. Educate yourself. So it’s really important to know it exists, know that it’s a risk and then do some education to see what you can do to minimize that risk. So be aware but not afraid and seek some advice. Certainly come to us, we’d be happy to help.

T: Excellent message. Now for those interested in contacting your organisation. How can they get in touch with you guys?

C: They can certainly find us on the website at epilepsy.org.au and we’ve also got a very, very active Epilepsy Action Australia Facebook page and of course they can call us on 1300 374537.

T: Thank you much for coming on the show today. I really appreciate it.

C: It’s my pleasure Tabetha. Thank you.

T: And that was Carol Ireland, CEO and Managing Director of Epilepsy Action Australia. We’ve just been talking about the new partnership between her organization and SUDEP Action. We also discussed all about epilepsy, its causes, treatment etc. If you liked this interview transcripts and archives are available at www.hpr.fm. We’re on all social media platforms, so don’t forget to follow, like and subscribe. We’re also available for download on SoundCloud and iTunes. I’m Tabetha Moreto and you’re listening to Health Professional Radio.

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