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Turning epilepsy on its head


30 June 2017

Epilepsy Society's content manager Nicola Swanborough explains how BBC Three's 'What not to say to someone with epilepsy' will do much to smash the stigma around the condition.

Epilepsy isn't sexy. It's a common complaint we hear at Epilepsy Society. Nobody wants to talk  about  it. Politicians aren't interested. The public doesn't understand. It's a low priority on the government's agenda. And the media only does dementia. Well, and  Alzheimer's and cancer.

In National Epilepsy Week we struggled to get any real engagement from news channels about the lack of epilepsy awareness. Our survey showing that two thirds of UK adults would not feel confident in helping someone during or after a seizure, largely fell on deaf ears.

Admittedly we were competing with a campaign to instruct the nation on how to cut an avocado safely. This was in response to an influx of amateur chefs turning up in A&E post-brunch with 'avocado hand' sustained while trying to prepare the fruit.

Chelsea and Westminster Hospital was recording four incidents a week of people who found their kitchen devil slicing into more than the flesh of the fruit ironically loved for its reported health benefits.

The London Ambulance Service attends 40 epileptic seizures a day. But avocado hand got the column inches.

Then along comes a diverse group of young people with attitude, accents and unreserved honesty, talking about living with seizures or fits (personal preference wins over political correctness here). And suddenly epilepsy is on the agenda.

BBC Three's Things not to say to someone with epilepsy nails epilepsy. It's edgy, confrontational and above all it's funny. Daniel, Torie, Chloe, Josh, Nick, Kat, Christina and Derek tell it like it is, explaining epilepsy with effortless wit and irony.

As the title suggests, it's all about what not to say to someone with epilepsy and there's headline grabbing stuff in there such as 'have you ever had a seizure during sex? 'No but I'll put it on my bucket list' comes the answer.

But the video also tackles tiresome misconceptions such as the belief that everyone with epilepsy is photosensitive. In fact  less than three per cent of people with epilepsy have seizures triggered by flashing lights. As the young man in the yellow t-shirt replies through gritted teeth to people wanting to turn the flash off:  'Just take the damned picture.'

But if the dialogue is #street and #hip, it isn't afraid to pack a punch. The reality is as raw as the delivery is edgy. 'I had 20 seizures on Saturday morning and felt wiped out for the next three days' says one participant. 'I could be walking down the road and could have a seizure. I could be crossing the road and be hit by a car,' man with yellow t-shirt.

But one of the most hard hitting moments comes in response to 'is epilepsy a disability?' 'If someone says to me "is it a disability?", I invite  them to have a seizure, wake up in a pool of their own p***, with a concussion, not able to think of what they just did, having bitten through their own tongue, then tell me it isn't a disability.'

It's powerful stuff. In five minutes, eight young people turn epilepsy on its head, normalise it completely while giving incredible insight into the impact of excess electrical activity in the brain.

Our supporters: 'witty, informative and real' said one Facebook post. 'It made me feel so much less isolated,' said another.

Stigma is a big issue for people with epilepsy. This video will do much to smash that stigma. Thank you.

More information

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