00:00Epilepsy is surprisingly common. One in a hundred people live with epilepsy, which means living with taking daily medication for
00:06their epilepsy and living with the threat of being blindsided by a seizure at a moment's notice.
00:12And yet, if you really ask around, you know, people don't talk about their life with epilepsy and it's important
00:18to put it in the shop window. And that's what Purple Day is all about.
00:20Yeah, sometimes, you know, from the very beginning, some people might have a more tricky time. Maybe they've had a
00:26tumour or maybe they've had a head injury, maybe they've got additional needs, but there are lots of people out
00:31there with otherwise normal lives, normal brains.
00:34And no matter what we do, medicines in different combinations and different doses, it just won't work for them. And
00:39that's where alternative treatments are needed.
00:41And what sort of alternative treatments are available for NHS patients whose seizures aren't controlled by drugs alone?
00:46Epilepsy brain surgery is always an option, but then we've got additional things like diet treatments and stimulators that can
00:52be used to control people's seizures.
00:55Okay. And how does living with uncontrolled epilepsy affect people's day to day lives?
01:00Yeah. So, I mean, the seizures are the headline acts, but actually it's the time in between the seizures that
01:06can be particularly grueling as well.
01:07So people often report problems with fatigue, with sleep issues, wellbeing, anxiety, low mood.
01:14This is a neurochemical explosion in the brain that's causing these seizures.
01:18And with it, it can cause a lot of problems with mood disorders and anxiety.
01:23And then you add in the side effects of medicines on top and it become quite a challenge.
01:28So, I mean, it's easy to imagine how missing days for appointments and missing days for seizures could affect things.
01:35But even that day-to-day concentration, the motivation for homework, the amount of sleep you might need, you know,
01:41all of those things lead to people being undereducated and then potentially underemployed afterwards.
01:47What would your hope be going forward in terms of epilepsy, in terms of people's knowledge, people's awareness, things like
01:54that?
01:54What would your hope be for things like people do?
01:57If people could take an interest and think about that person that they share an office with who has epilepsy
02:02and think, would I know what to do if they had a seizure here?
02:05Or if they're running a sports team, would I know what to do?
02:08And go and find a resource like Epilepsy Action, the charity, and go read up about that.
02:13I think that would be a really good thing.
02:16Is there any hope for any sort of changes for epilepsy on the horizon at all at the moment?
02:23Yeah.
02:24So, I mean, there are so many different causes of epilepsy, but we are making particular inroads.
02:28Rare genetic epilepsies are really targetable either by specific medicines or gene therapies that can change things around.
02:37And there are children undergoing gene therapy for rare genetic epilepsies here in the United Kingdom with plans to move
02:45that into adults in the not too distant future.
02:49So, gene therapy is not coming for the average adult in a clinic near you yet.
02:54But picking off these as examples of where we can bring research into the clinic room is really exciting.
02:59So, well, we can talk about all of these.
03:00So, I think we want to do that in a while and think about this.
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