Page last updated at 06:42 GMT, Wednesday, 10 June 2009 07:42 UK

'Time to face up to feared disease'

Mark Richardson
By Mark Richardson
Professor of epilepsy, Institute of Psychiatry

Brain and brainwaves during an epileptic fit
Epileptic seizures are caused by excess electrical activity in the brain

A thousand people a year are killed by a common disease - but understanding of epilepsy is hampered by stigma and fear.

In this week's Scrubbing Up health column, epilepsy expert Professor Mark Richardson says the condition should receive the same attention as other causes of sudden death.

It's surprising in 21st century Britain to come across a disease which, for many people, is still associated with fear and stigma.

Not long ago, I was driving home from my regular outpatient clinic in a residential centre for people with severe epilepsy.

As I turned a corner I saw a man lying in the road, and a group of people huddled on the pavement some distance away.

We thought we shouldn't touch him

I stopped to administer first aid, asking the onlookers to tell me what had happened.

"He's an epileptic from the colony up the road," said one. "He fell down and had a fit. We thought we shouldn't touch him".

So they left him unconscious in the middle of a busy road, in the rain. I can only imagine that fear and ignorance prevented them from helping.

'Strange and unreliable'

Epilepsy is very common, affecting about one in 170 people - that's almost half a million in the UK.

Unlike asthma and diabetes, other common diseases in which otherwise normal people may experience sudden health crises, epilepsy isn't something people talk about very much.

People with epilepsy have historically been regarded as strange and undesirable, discriminated against in extreme ways such as legal restrictions on employment and marriage.

This unreasonable attitude persists despite treatment for epilepsy being fully effective for 80%, and people with epilepsy usually being entirely intellectually normal, with unremarkable family lives and regular jobs.

But that's not the important issue here - we can easily take on board the message that epilepsy is common and people with this condition should be able to live a normal life free from prejudice and stigma.

'Few clues'

Until recently few of us will have heard of anyone dying because of epilepsy, but national statistics reveal the shocking figure of more than 1,000 people per year in the UK dying because of epilepsy, more than a third being young adults and children.

Worse, good evidence suggests that 40% of these deaths would be prevented by better medical care and treatment.

There have been major efforts to educate healthcare professionals about epilepsy, and comprehensive treatment guidelines have been produced, but needless deaths continue.

A thousand deaths per year puts epilepsy alongside other common causes of death which attract publicity and funding for medical research

What about the other 60% of "non-preventable" deaths?

Most of these are sudden unexpected deaths - when these have been witnessed, it has often been a seizure from which the person simply did not recover, but died during or immediately afterwards.

Such awful events have echoes of cot death and sudden cardiac death.

Unlike these other conditions, there are very few clues about the cause of sudden unexpected death in epilepsy, and no strategies to reduce the risk.

A thousand deaths per year puts epilepsy alongside other common causes of death which attract publicity and funding for medical research.

'Out of the shadows'

Currently, doctors can do little more than advise people with epilepsy about the risk of death, and recommend appropriate tests and treatment for the seizures.

Sadly, the experience of Epilepsy Bereaved, a UK charity focussed on supporting people left behind following an epilepsy-related death, suggests that even these basics can be overlooked.

Many people with epilepsy and their families have no idea that they have a risk of dying from their disease.

There is a pressing need for a shift in attitudes - amongst all of us, to reduce stigma surrounding epilepsy; amongst healthcare professionals, to take epilepsy treatment and the risk of death more seriously; and amongst politicians and medical research funding bodies, to lift epilepsy-related death out of the shadows and onto the agenda.

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