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Epilepsy in Young People

Risks, injuries and SUDEP from epilepsy

People face risks in all areas of life and people with epilepsy may face specific risks because of their epilepsy. These include injuries or accidents as well as risks to health and wellbeing because of seizures. The risk of sudden death is also higher for people with epilepsy than for others, and is discussed further below. Risks are very individual and depend on the type of seizures a person has and factors in their personal lifestyle. 

Looking at possible risks to health and safety, such as accidents, can be difficult or frightening and it may not be something that one is ready to think about. But being aware of possible risks and ways they might be reduced or managed can help put some of the risks around epilepsy into perspective. Here young people talk about their thoughts and concerns about risks, experiences of injuries and SUDEP (Sudden Unexpected Death in Epilepsy).

Risks and injuries

On the whole, young people we spoke with weren't particularly concerned about risks related to epilepsy. The main things that worried them were practical issues, such as having a safe home or work environment, safety in travel and driving or doing sports (see 'Driving, transport and travel' and 'Sport and exercise'). A few people worried about the possible impact of frequent seizures on their health.

 

Paddy feels lucky because his epilepsy is well controlled and doesn't affect his life very much.

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Age at interview: 21
Sex: Male
Age at diagnosis: 18
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I don't really see it [epilepsy] as a condition like' if I get a form and it says do you have any disabilities, I don't write it down. It doesn't affect me, I take my tablets that's it. They may as well be, those tablets could be like vitamins, it wouldn't make any difference. But I know of other people, my girlfriend's friend in [city name] has got it a lot worse, like to the point where even with medication they have two, maybe three fits a week, and that's, it's pretty serious. With how I feel, how I felt after the fits I've had, I wouldn't like to be feeling like that every, every other day, yeah it's quite, it's serious, it can affect you. And it's serious in the fact that it can affect your job, I think a lot, especially with driving, certain jobs it can stop you which is, well anything that forces you out of one particular career is pretty, pretty severe. But like I say for me, I'm quite lucky, I don't really consider it a problem.

 

Francesca often thinks about the potential risks from epilepsy in her daily life.

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Age at interview: 20
Sex: Female
Age at diagnosis: 18
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Could you describe how you think that epilepsy affects just your daily life at the moment?

Yeah, it does affect it. You can say that it doesn't but really it does, even as much as you know, sort of being on your own in the house and things that like and people would rather that you were with someone and stuff. And you know going places, you always sort of think one step ahead, you know and you think do I feel okay to cross this road you know and all this sort of stuff as well and you are constantly, it is almost like doing a risk assessment everywhere you go and your whole time you are thinking about the potential possibility of having a seizure and how that is going to cause a problem or affect you at that time or where you are.

So is it on your mind a lot?

It is yeah. Not so much as 'oh I am worried about having a seizure' or 'I am embarrassed about having a seizure' but it is more a case of you know if I do have a seizure am I gonna hurt myself falling on this floor is really what the problem is.

And have you had to make changes in terms of safety, like taking showers instead of baths or'?

Yes. I take a shower instead of a bath and if I am in the bathroom I don't lock the door and stuff you know and at first it was I was made to sing or talk or something so that they knew that I was okay [laughs]. But now they sort of let me get on with it.

And how do you feel about having to leave the door unlocked or stuff like that?

At first it was quite a shock and it made you feel a bit uncomfortable and you feel like well I wouldn't have to do this normally, so why should I do it now, but you get used to it in the end you know.

People can injure themselves when they have seizures. These injuries can vary from very minor injuries to very serious, even leading to disability or death (for example drowning when having a seizure in bath). Many young people we spoke with had been injured, mainly minor scratches and bruises, but some had broken a limb or their teeth. One man got such bad facial injuries during a tonic-clonic seizure that he needed facial surgery afterwards. A couple of people had been burned after spilling boiling water over themselves.

To reduce the risk of injuries many people had made some adjustments to their homes (see 'Living arrangements and safety') or the ways they lived their lives. For example, some said that they took showers instead of baths or, if they did have a bath, they didn't lock the door, made sure the water level was low and the water not too hot. A seizure in water may lead to drowning and it is advisable to always have someone else present in the bathroom when having a shower or a bath. Although there are risks associated with showering they are not as great as having a bath and with reasonable precautions most people should be able to shower alone. A couple of people we spoke with were cautious because they had had a seizure in the bath or shower. A few people said that they felt silly or uncomfortable having the bathroom door unlocked. 

Some took extra care, especially in the kitchen, with hot water, cooking, with ovens and knives, or when using tools. A couple of people joked that the risk of having a seizure when handling glass or hot water was a great way to get out of cooking or washing up at home! Those people who had an aura before a seizure said the aura enabled them to get to a safe place before they became unconscious.

 

Gemma describes various safety precautions she takes at home.

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Age at interview: 17
Sex: Female
Age at diagnosis: 16
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I had to make lots of adjustments things like, because of the nature of my seizures, I have to cook, like when you're cooking and you've got the hob, the saucepan handles have to be facing the other way so you can't hold them like that they have to be like that.  which is basically just in case you fit and then knock it and you've got boiling sauce or water all over yourself. Ad we have a sign on the bathroom door for when I'm in so I don't lock the door, but other than that it's pretty much as normal. I wear identification jewellery so that if I was to have a fit anywhere people would know but other than that I just live a normal life with it.

I said about the saucepan handles they can't face out like most people want to cook with. We had a few issues here because I insist that the knives are blade down when they're draining, so you're meant to do that, what else' don't carry a pot of sort of pasta in its water that's just boiled across the kitchen, the plates come to the hot things rather than the hot things going onto the plate, it's just extra precautions and I think, at first I thought 'oh my goodness I'm never gonna be able to do that sort of thing' but it comes naturally now so.

Yeah. Do you cook on your own or use a hot iron or things like that?

Yeah [laughs], I've heard a couple of people say, 'Oh you should be cooking in the microwave.' And that sort of thing but, I don't know I just, I wanna do the same as what other people do I suppose. I iron and I cook on a hob and an oven and everything else maybe it's not the most sensible all the time but, I do it [laughs].

 

Archie tries to make sure he's safe by doing woodwork with his dad. He also has an aura so can...

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Age at interview: 16
Sex: Male
Age at diagnosis: 10
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My dad's got a garage; he's got a whole lot of saws and other stuff there that you can do tons of woodwork in. I've done, so far I've made, a cabinet type racking shelves for my desk and some other stuff as well. So, it's quite good.

Yeah. What about sort of handling all the tools and things, are you cautious of them?

Yeah, yeah, my dad's always there, when I do my woodwork. It's just in case if I did have an aura when I was using the saw he would, I would tell him and he would probably, deal with it.

But it's all been okay?

Yeah, it's all been okay, so far.

 

Will did a degree in Product Design and is always wary when handling dangerous machinery.

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Age at interview: 24
Sex: Male
Age at diagnosis: 14
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At university they didn't bat an eyelid, the technicians, very worried about everyone's health and safety. So obviously every time you use the band saw I always, it's probably one of the most frequently used machines but it's actually the one that gets me scared the most, 'cos you're getting very close, your fingers are getting very close to that blade. And there are things where you got a metal lathe, I mean, you know, we're not at school any more we don't wear ties at University so you haven't got, you don't have to get your tie, you know, caught in the chuck, the rotating chuck., so yeah there are things like that that are very dangerous. Yeah, it's very difficult for me to actually imagine how, how I would collapse over a machine. I suppose probably the band saw it's probably the most dangerous machine, and I mean in terms of my condition the freak chance that it happens on that time [laughs], is just too small. It's the same as having a fit while driving a car, while just walking down the street, walking down Oxford Street, any street, anywhere, just sitting on the sofa, but you, you just don't know where it's gonna happen so you have to be cautious about everything. But being that I don't have them that often then, you know, the chances are limited so. But I'm always very wary.

One woman said the reason she stopped smoking was because it could be dangerous if she had a seizure whilst smoking. Another woman had a safety pillow because she often had seizures when sleeping.

 
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Bex describes the safety pillow she has.

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Age at interview: 20
Sex: Female
Age at diagnosis: 13
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I have got like almost a safety pillow just in case I am ill then I will have the pillow instead of you know a normal one. Just reducing the risks really again, just watching your trigger factors and travelling if I am ill. You know if I am going through a drug changeovers, I will make sure someone travels with me and things, so that helps. Just again it makes you feel better about yourself, you know just safety.

And what is the pillow, how does it work?

It is just a memory foam pillow but because it has sort of got a hollow centre, so instead of being all pillow, you can breathe, it gives you that extra space to breath and it just makes it better, you know, if you roll over it's less dangerous.

A few people said that they didn't want to go out or to the shops on their own but felt safer going out with their friends. Some also carried medical jewellery with them, which had the necessary medical details and their ID in case they had a seizure when out on their own.

 

Bex feels safer because she wears a medical alert chain.

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Age at interview: 20
Sex: Female
Age at diagnosis: 13
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When I was younger, obviously when you know, the leaflets came out, everything suddenly changed, so I had someone sit with me when I was in the bath type thing and you know lots of things changed to aid safety. Now I am older, yes, it is things like that. I do tend, I take a shower. I always have someone, like you would have next of kin, I always have someone that is sort of got their phone on at all times and I can call them. I have got a medic alert chain thing as well, you know, so that that helps, just in case. You know if there is a seizure someone, not so much for my benefit but people feel safe that there's something there, someone there they can call and get the help. Obviously I don't know what is going on so I don't really mind, but this helps other people rather than myself.

How does that work?

Medic alert is a is a charity basically, they provide you buy a piece of jewellery or something with the medic alert emblem on, you know different charities have similar things with a card and basically there is number on it and then you call up if the person is having a seizure and they will inform next of kin and they tell you what to do as well. I think it is good you know. It is good for families and my friends to feel safe. They feel comfortable that they can help me, because it is naturally what they want to do.

And you carry that with you all the time?

Yeah. I carry that. I tried to carry some form of, well that is my form of ID but you know I try to carry something else as well, just in case you forget to wear your medic alert or that's always safer.

In addition to risks related to injuries, a couple of people worried about the long-term effects of frequent seizures on their brain. Short, uncomplicated seizures that stop on their own are not thought to cause any permanent damage to the brain. Prolonged seizures or status epilepticus can be damaging. If recurring seizures do damage the brain, the type and duration of the seizures and the specific cause of the epilepsy may be important factors.

 

Harry is worried about the effects of seizures on his brain.

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Age at interview: 20
Sex: Male
Age at diagnosis: 7
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One of the big fears that I had when I was having these big fits is what if I have some, one fit, 'cos these fits are usually dangerous in the sense that they're dangerous to you, your brain can't take it so, 'cos your brain can only take so much. And I was worried that one day I would wake up and I wouldn't be able to walk or, I would, or I might not wake up or, wake up as a you know' a vegetable basically. And I wasn't, wasn't afraid of dying really, I was afraid of that because I always thought if I have a seizure and I die I don't know about it or I'm in a wheelchair or I don't want my life ruined by it.

Some people said that they felt lucky because their seizures were well controlled or because they felt the type of seizures they have didn't put them at a significant risk. Several said that they couldn't think about every possible risk there might be because then they'd never actually leave the house. 

 

Finlay says he doesn't want to change too many things in his life because of epilepsy.

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Age at interview: 21
Sex: Male
Age at diagnosis: 11
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I think they're [seizures] so rare, I mean the both times were, they were kind of my fault, I had stayed up all night before I got on the bike, and I can't remember why I had the ladder thing, but then again it was my fault I think. It's like you can be hit by car and then it would happen, and a lot of my life revolves around doing things that you could say are risky. Like I don't wear a helmet when I ride a bike, and the neurologists are outraged, they say, 'You have to wear a helmet.' Yeah, yeah okay, but I find that it ruins the experience of being free on a bike so much more, I think that it limits my fun on a bike, and that's not like very politically correct to say that, but it's just what I feel. And again with the ladder thing, you have to be, as a technician I feel you have to be up a ladder, you can't be a technician if you're scared of heights, so if I say I'm not going up ladders' cos I'm an epileptic, then I've lost the job and I'm not prepared to do that. I said to my tutors, I'm epileptic and they asked the questions and I put them at ease and said it's controlled, generally it's fine, I have an aura, and that's how I experience it. If I have an aura, I'll come off whatever I'm doing, that's dangerous and I can sit down, it's happened before I go. I've worked as a barman in restaurants and if I'm working in the ovens, I'll step away from the oven for example and just wait till the aura subsides. But honestly no, that's just a part of my life I'm not prepared to change for epilepsy and generally I try my hardest not to. And with the ladder thing, yeah, I fell off the ladder, but I landed on wooden sheets that were being painted, and so I was covered in paint, but it cushioned my fall. And it's fine and I would rather go through these experiences than limit all the experiences you know.
 

One man said that it should be up to the individual to decide whether to change his or her lifestyle because of epilepsy, or choose to take some risks; “If it's your condition, it's your decision.”

Those who chose to avoid doing certain things, like swimming or travelling on their own, said there were many ways they could get around risks and enjoy most things they liked (see 'Driving, transport and travel' and 'Sport and exercise').

Many young people had been given information about practical ways to reduce their risk of injuries but some said they hadn't been told about any risks at all. Several wanted to get as much information from their doctors as possible and a couple of people pointed out how important it was to communicate information about risks sensitively and appropriately (see 'Experiences of health care services and professionals').

 

Harry was told of the risk of status epilepticus if coming off his medication. He was given no...

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Age at interview: 20
Sex: Male
Age at diagnosis: 7
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Harry' I was told about the side effects of coming off the medications, 'cos he was gonna take me, he was taking me off this medication saying like, 'I warn you though that this could actually kill you, this could actually'

Mum' Cause a fit that won't stop [status epilepticus].

Harry' 'Cause you this fit that won't stop.' you know like you might, you could' and then I would say well of course you'd ask the questions, 'What happens in the fit?' And he said, 'Well you could die, you could be paralysed, you could do this, you could do this, you could do this.'

Mum' Very brutal wasn't it?

Harry' Which was, and like he just kept a stern look on his face, serious look on his face, and he didn't stop to say, 'Well I don't, I shouldn't imagine this wouldn't happen.' And he gave me, he just put me on the spot and said, 'Okay do you want to come off your tablets, yes or no?'

Mum' You did, didn't you?

Harry' I did come off them, I did have some bad fits, which like basically I did actually like lose quite a lot of strength on the one side of my body for a while.

Mum' You had to have diazepam to stop it.
 

SUDEP

If a person with epilepsy dies suddenly and no other cause of death is found, it is called SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP is connected to seizures but what exactly causes it, is unknown. The most likely explanation is considered to be a seizure which interferes with the part of the brain that controls breathing or the heartbeat. A few young people we spoke with had heard about SUDEP but none had been told about it by their doctors. People who talked about SUDEP were not especially worried about it though many would have liked more information about it. A couple of people knew of someone who had died of SUDEP and one woman's uncle had died of SUDEP.

Risk factors

A small number of people die early from SUDEP each year (about 1 in 1000 people with epilepsy in the UK). People's individual risk of SUDEP varies and there are ways to reduce the risk. This is why it is important for people to understand their individual type of epilepsy and how best to manage their condition.

Some factors that may be associated with a higher risk of SUDEP are the frequency of seizures (particularly tonic-clonic and complex partial seizures), having seizures during sleep, not taking AEDs as prescribed, abrupt and frequent changes to AEDs, being a young adult, and drinking excess amounts of alcohol or taking recreational drugs. 

Reducing risk

A key way to reduce the risk of SUDEP is to try and get the best seizure control possible. Correct diagnosis and treatment are vital. This should involve a referral to a specialist with an interest in epilepsy and agreed regular reviews with a health professional who has a good knowledge and understanding of epilepsy. For the right medication to be given at the right dose, the medical team will need precise and ongoing information about the number, frequency and type of seizures as well as the nature of any adverse effects experienced.

It is a good idea to raise any possible concerns about SUDEP with the consultant or epilepsy specialist nurse. See our resources page for links to more information on SUDEP.

 

Ashlea's mum knew a young man who died after a seizure.

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Age at interview: 21
Sex: Female
Age at diagnosis: 18
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My mum's friend from work she had a son who was epileptic, same epilepsy as me, diagnosed when he was 18, and then when he was 22 he went to the pub with his mates in the afternoon, in the morning, no in the afternoon, must've been in the afternoon 'cos you can't really go to the pub in the morning well, you can now, but you couldn't then [chuckle]. Had like two pints or possibly three, I can't quite remember now, came home, went for a nap and he had a fit and actually like choked on his vomit because that's often the common cause. You can get that when you're and he died at 22 and obviously being 21, that's quite you know it's quite a scare for me so I always sleep on my front, no matter what so.

Young people had first come across information about SUDEP on various websites or in leaflets and it had come as a shock to them. One woman was really angry that her doctor had said nothing, and that she and her mum found out about it accidentally. 

 

Bex was angry that her doctor hadn't told her about SUDEP and her mum found out about it...

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Age at interview: 20
Sex: Female
Age at diagnosis: 13
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I suppose for my mother, one time she was reading a leaflet and at the beginning of the leaflet there was a note and it was to the people who had lost people through epilepsy and my mother didn't realise just you know the effect epilepsy can have. So she, you know that broke her again, you know, she was quite upset.

It's something that did concern me in a in a sense that we weren't told about SUDEP and in a way I was angry. I wasn't scared or anything you know. The risks were very, I was told, quite low, and in a sense I was told the risk of photosensitive epilepsy was low. So I was aware that there was a chance and I thought well if I've got photosensitive epilepsy there is always a chance of SUDEP but there's always chances of other things happening in life, you know, so it didn't really matter so much to me. But I was angry that my mother found out and I was never told. You know that was quite hard, you know to see my family go through that and sometimes my cousins might say something and make me realise just how much they think about it and I never think about it at all really, but I know my cousins were very. A lot of people I think they know about it a lot and it is always on their mind type of thing.

Why were you angry?

I was angry because you know I wasn't told. It was something we picked up in a leaflet and I think I think people should be informed. I think it does scare people maybe. I'm not sure when is a good time to be told, but it's something, I think now, people are told about it more now, but they weren't, they weren't when I was 13 and it was something I think a lot of research has gone into now. But yeah, I think people should be told, and they shouldn't have to find out and it is important to know the risks so that you can prevent them you know.

All the young people we spoke with felt that information about SUDEP should be given more readily and openly. One woman said she feels it's a person's right to know and a doctor's duty to tell them everything about their condition. 

 

Becky says people have a right to know about all the risks related to their epilepsy, including...

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Age at interview: 23
Sex: Female
Age at diagnosis: 15
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I think you should definitely still be told, 'cos if you're diagnosed with some sort of condition, you should be told about all the risks involved with that condition. Because well, you have a right to know of everything connected to that condition. That's just what should happen. Yeah, you should, when you are diagnosed with something like epilepsy or diabetes or you know, anything, along these kind of lines you should be give a big wedge of leaflets and you know, a DVD whatever, that says exactly everything that explains exactly what you've got, exactly all the different types of epilepsy. Even if you've only got one specific type of seizure you should be told, you should know exactly what all the different types of seizure are, just in case your epilepsy changes. Like for example when I was running around the house, I mean that was a type of seizure that I didn't know. And you should be told about things like SUDEP, you should be told about absolutely everything, you should be told about all the support works, networks available to you, everything, absolutely everything, regardless of how big or small the risk is. You should be told because you need to know that it is a risk, either way.
 

A couple of people pointed out that it's important to tell young people about SUDEP in a sensitive way and, if they're very young, to perhaps talk to their parents first. One woman said that it was enough for her to know that there was a risk of it but she didn't want to know more details. A few people emphasised the need for people to know about the risk of SUDEP so that they would appreciate the importance of seizure control and taking their medication regularly.

 

After Clair found out how to reduce the risk of SUDEP, she made sure she always took her...

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Age at interview: 22
Sex: Female
Age at diagnosis: 19
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You would've wanted to know [about SUDEP from the neurologist]?

Yeah I would and I know there's a number of other people who I've met through these sorts of things [volunteer scheme] who also feel the same but a lot of parents feel that they don't want their, they wouldn't want their children knowing about it so it's kind of that what age do you sort of approach the subject so.

Now that you have all the information, all the facts about SUDEP does that worry you, scare you?

Not really I don't think I'm that high risk 'cos obviously my seizures are well controlled I make sure I take my medication regularly. It did make me think more about that because to start with I was kind of taking it in the morning and in the evening and that varied day to day, so now I'm a lot more, I take it at ten and ten. And I make sure I do take it and ten and ten but that also helps with my sleepiness as well so [laughs] but I have become much more, sort of set in the times that I take my medication since reading that. So I think that's one thing 'cos I think a lot of people do sort of forget don't really think twice about you know of taking it four or five hours late if they forget so I try and be a lot more careful since reading that, yeah.

Yeah, so in that sense there was really a good benefit from knowing about some of the things that you can do?

Yeah, yeah.
 
 
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Ashlea would have preferred to get information about SUDEP from her neurologist and says...

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Age at interview: 21
Sex: Female
Age at diagnosis: 18
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I would've liked to have known a lot more myself because that's the kind of person I am, I like to know what I've got you know, what this means, the implications, the actual risks, you know. Not just well there is a risk of this, I'd like to know what the risk is you know and that's how I work. I mean I can understand that some people wouldn't, for instance I'm not a very sort of panicky person generally, so, being told that there is sudden death in epilepsy wouldn't make me immediately go, 'Oh my God this is dreadful.' and start crying. That would make me process it and think about it and like find out more about it, but I understand that some people, it would panic them. So I think you know just, you know it would be better if the information was given but the neurologist should be able to assess how to give the information rather. But I would definitely prefer to be given the information by the neurologist and by the clinic because I had to find it out for myself and you know, the average person doesn't have a medical text book.

We also spoke to a couple of people who had lost a young family member to SUDEP. None of them had known about SUDEP or the risk factors. All of them would have wanted more information about SUDEP from the doctors when their family member was diagnosed with epilepsy, or soon afterwards.

One person said that people with epilepsy should be told about all the risks in the same way as people with asthma or diabetes, and their families are. People felt that knowing more about risks and SUDEP would have enabled them to ask questions, deal with factual information and fully appreciate the importance of minimising risk factors - for example having a regular routine, taking medication regularly as prescribed and avoiding drinking excessively.

Last reviewed May 2016.

Last updated March 2012.

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