‘Oh, that’s the one where you writhe around on the floor.’
Delphine van der Pauw, Research and Information Manager at Epilepsy Research UK is lamenting the multitude of misconceptions that people have about the condition she devotes every day to explaining.
‘Tonic-clonic seizures [which affect the entire brain] are quite a common type that gets portrayed by the media because they’re so violent, so dramatic… But they’re not the only kind.
‘There’s something called a ‘complex partial’ seizure… where someone might be walking along and suddenly decide to cross the road – they’re not aware of what they’re doing and they’re really dangerous but some people get accused of being drunk. That does happen, if people have seizures on the street they get accused of having overdone it. So there’s those sorts of misconceptions.
‘Then of course there’s the flashing light thing. Everyone thinks that everyone with epilepsy is triggered by flashing lights, which is of course photo-sensitive epilepsy. But only about one in twenty people with epilepsy are photo-sensitive.’
Delphine tells me that there are in fact forty different types of seizure (‘that people know about’). ER:UK, which dedicates all its time and resources to attempting to understand this widespread and invasive condition, has its work cut out.
‘We’ve got this condition which is huge and is actually epilepsies rather than epilepsy – because it’s definitely not one condition – and there’s just so much research to do into the different types: why people have the seizures they do, why people aren’t responding to existing medication – which is the case in about a third of people. That has been the case for years despite developments and enhancements in drugs. The new epileptic drugs might alter your side effects but it’s still the case that people aren’t responding…
…Sorry, am I alright to go on?’
Delphine laughs but her immense passion for this area, which (prior to joining the organisation) she had no personal connection to is evident even over a phone connection. She builds up a similar head of steam at numerous points throughout our conversation.
When I ask about this passion, she sounds genuinely rueful about how little attention is given to epilepsy. ‘It’s so neglected and so misunderstood and there’s just so much work to be done and that’s why I feel like I’ve got a really close connection to it. You build that, I think… you don’t want to leave. There’s so much to do!’
Epilepsy is known by name, if not in any detail in public consciousness. ‘They call it the Cinderella condition’, Delphine informs me. It’s not a condition that regularly makes the headlines, so gets forgotten, left at home. ‘It’s never going to be as big as cancer but we can make it a hell of a lot bigger than it is now.’
‘It affects about one percent of people, the official figure is one in a hundred and three. In a lot of cases, about two thirds of cases, the cause is not actually known.’ Surgery procedures exist for some localised forms of the condition ‘but that’s a very invasive hardcore procedure.
‘For a lot of people, surgery won’t be an option… because too much damage is going to be caused.’
ER:UK came into existence in 2007 after a merger between two separate charities. For a tight-knit organisation (‘there are only 6 of us’) they fund an enormous amount of annual research (though Delphine calls it ‘a drop in the ocean’) around understanding, treating, and curing epilepsy. ‘It’s all public money, there’s no government support. We obviously have to be extremely mindful of how we spend it’.
To Delphine, ER:UK is ‘kind of like a big engine really’. Her role within that is a vital one: ‘I am responsible for coordinating the committee that actually decides on who’s going to get the funding’. She also supports communications, answers multifarious queries, and organises expert workshops.
A highlight is being right at the forefront of cutting edge medical research. I can hear the enthusiasm again while she tells me about optogenetics, a technique whereby neurons can be controlled by certain wavelengths of light. Although it’s a long way off, research in this area could ultimately result in a device that detected when a seizure was imminent, and could prevent it from occurring.
I’d need a much longer page to do justice to the full detail of this and the many other developments we spoke about. That there are such people working away on solving ‘the Cinderella condition’ with the rest of us unaware is mind-boggling, and humbling. Delphine had a final message for me to convey to those who have and those who might donate to my fundraising page:
‘It’s a fantastic cause, so many people are affected, so much is unknown, but there’s so much we can do to address that and we just really, really need people’s help. Please support us.’
On Sunday I will be running the 2016 Brighton Marathon for Epilepsy Research UK. There’s still time to donate to this fantastic organisation and support their vitally important cause at https://www.justgiving.com/lukedavisbrighton16.