Epilepsy is robbing me of my memory

Helen Purves in Salford Helen Purves has trouble recognising herself in childhood pictures

Our memories define us and make us human. Without memory we are an empty shell, unable to make even the most basic connections with others. Helen Purves is only 29 but already she has forgotten all of her childhood and most of her university years. When looking through pictures, she is often unable to recognise a younger version of herself, her parents or her brother.

Start Quote

I doubt there are many other places that would be as supportive and understanding of me as the BBC”

End Quote Helen Purves Assistant producer

If this sounds like the plot of a novel, it's because it is. SJ Watson's Before I Go To Sleep - about a woman with a rare type of amnesia - was a massive bestseller last year. This, however, is not the stuff of fiction but the true story of someone's remarkable experiences.

Purves, who is an assistant producer in Salford, has a type of epilepsy that is eroding her memory every day. But she refuses to let this stop her from working and trying to lead a normal life - the things that most of us take for granted.

She is speaking out about her condition because she passionately believes that more could be done to help people like her.

Stigma

'There's a stigma around it [epilepsy]. It's so, so massive - it's worse than for mental illness and that's why I'm happy to talk about it,' she says. 'People need to be aware, because there are so many people with my type of epilepsy who go undiagnosed because they think they are mad and won't tell anyone.'

Temporal lobe epilepsy, which Purves has, affects the part of the brain connected with memory and creativity. Without medication she would seizure about five or six times a day. With medication she keeps this mostly under control, but the drugs only stop her from experiencing the seizures and not their side effects - a loss of memory.

Although many people believe that epileptics always convulse, Purves' seizures are non-convulsive and can go undetected by others, making it a hidden disability. She explains that before a seizure she will often get an intense feeling of déjà vu, associated with an increase of epileptic activity in the brain. The seizures will vary in length from five minutes to half an hour and she will be conscious throughout. They leave her feeling sick afterwards, called the postictal state.

Epilepsy - what you should know

• In the UK, there are over 600,000 people with epilepsy.

• In developed countries, more than 60% of patients achieve long-term remission, usually within five years of diagnosis.

• The possibility of remission decreases the longer the epilepsy is active.

• Antiepileptic drugs are effective in 60-70% of individuals.

• People with epilepsy have an increased risk of premature death, accounting for 500 deaths per year in the UK.

• Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five, around four will go on to develop epilepsy. A seizure is defined as a burst of intense electrical activity in the brain.

• There are many types of epilepsy. Some start when you are very young, and some in later life. Some will last for a short time and other types can last a lifetime.

Sources: Epilepsy Action and Adult Epilepsy, Lancet 2006 (authors John S Duncan, Josemir W Sander, Sanjay M Sisodiya, Matthew C Walker)

The young AP rattles off all these facts in plain, matter-of-fact language. There's no attempt to hide the severity of her condition, although she occasionally places an emphasis on certain words.

'Progressively worse'

'I've been told that basically the outlook is really bad.' There's a nervous laugh before she continues: 'My memory will get progressively worse. It's not something that will ever improve. It's really well known that basically every time I have a seizure my memory will degenerate and that will keep getting worse and worse.

'I don't know where that's going to end,' she concludes.

It's a painful admission, but Purves sounds determined to beat the odds. Already, her case is unusual because she is able to hold down a full-time job. At work she organises her day meticulously and writes many things down. She also relies on others to help jog her memory, by prompting her with small reminders about meetings or putting things into context.

She's currently working within Knowledge and Learning on a numeracy website for primary school children; she also writes for blogs and used to write for BBC Webwise.

Her career spans six years, all of them at the BBC. 'I doubt there are many places that would be as supportive and understanding of me as the BBC,' she says.

Outside of her professional life, Purves says she's generally exhausted by the effort of staying on top of her job. 'Socialising after work is really, really difficult for me. Next to impossible, in fact. I just want to go home, and sometimes I can barely bring myself to cook some food, because the organisational skills of that are too much.'

She relies on her boyfriend and best friends to help her and does better at weekends when she has time to rest for longer periods. When speaking of her family, Purves is characteristically blunt: 'My mother told me that I was mad and that I shouldn't tell anybody.' She laughs, but you get the sense that it's a coping mechanism she adopts. 'That was because of her lack of awareness of it,' she continues. 'My family has been supportive, but it has taken a while for them to understand it themselves.'

Positive outlook

Diagnosed with epilepsy at 22, Purves urges anyone with symptoms to contact their GP and then insist on being referred to a neurologist, who is better trained at spotting the condition. In her own case, she believes the late diagnosis helped her chances at having a normal life because she wasn't written off by the education system.

But this doesn't mean things have been at all easy - and still, today, many people are superstitious. 'I've had friends of the family who have disassociated themselves from my family because they are religious and they believe that I am possessed by the devil. I crap you not.'

There is courage in her words, an edge of defiance. Although her future remains uncertain, Purves' outlook is positive. 'My epilepsy doesn't hold me back - it makes me more determined to do well in life, just to spite it.'

Travel is one thing that is on her agenda, but it has a purpose beyond expanding her horizons. Next year she's going to SXSWi in Austin, Texas, a huge interactive festival. 'I'll be keeping an eye out for any technological developments that might benefit people with disabilities - both visible and invisible.'

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