Australian Broadcasting Corporation


LOCATION: http://www.abc.net.au/7.30/content/2002/s597974.htm

Broadcast: 03/07/2002

Support groups lobby for research into SUDEP

Reporter: Natasha Johnson

KERRY O'BRIEN: Up to 3 per cent of Australians suffer from epilepsy, making it the most common serious brain disorder after strokes.

Apart from the risk of a fatal accident or injury as a result of a seizure, few sufferers would have thought they could die from epilepsy.

But it's now estimated 300 Australians a year are dying -- more than half of them from a mysterious syndrome called sudden unexplained death in epilepsy, or SUDEP.

Once regarded as a rare phenomenon, SUDEP is being likened to sudden infant death syndrome.

It has no known cause and often strikes sufferers while they sleep.

As Natasha Johnson reports, bereaved families and support groups are now lobbying for more research and a national blueprint to save lives.

JAN McCALLUM-FIELD: I rocked her in total disbelief, and I as I rocked her in my arms in death, I remembered how I also rocked her in my arms as a little 7-week premature baby.

And just so excited at her birth and for all our dreams for our family together.

To hold her new in death was just total shock and total disbelief.

I didn't know you could die from epilepsy.

We were never told that.

And that's not right.

NATASHA JOHNSON: Five years after the death of her daughter Lisa, Jan McCallum-Field is still mourning and still angry.

28-year-old Lisa Kennedy was newly married and planning to start a family when she died suddenly and unexpectedly in her sleep.

She'd lived with epilepsy since she was 15, and while her seizures had become increasingly difficult to control, no-one thought that she could die.

JAN McCALLUM-FIELD: Her doctor told me after she was dead I went to talk with her, and I said, "Why wasn't I ever told that death was a possibility?"

She said, "But it's so rare".

Well, it's not so rare.

PROFESSOR MARK COOK, NEUROLOGIST, ST VINCENT'S HOSPITAL: It does seem to be a very common problem.

I'd have maybe 10 or 12 patients a year in my own practice die as a result of this problem.

NATASHA JOHNSON: As one of Australia's leading neurologists and President of Victoria's epilepsy foundation, Professor Mark Cook has long been aware of the syndrome, Sudden Unexplained Death in Epilepsy, known as SUDEP.

But his anecdotal evidence has now been confirmed by an audit of deaths in the UK, commissioned by the British Government after pressure from bereaved families.

It identified 1,000 epilepsy related deaths each year, and while many were from injury or accident caused by seizures, half were due to the SUDEP syndrome.

Based on those figures, it's estimated that 300 Australians annually are dying because of epilepsy.

About 150 from sudden unexplained death.

PROFESSOR MARK COOK: The UK case studies terribly is significant.

It really brings home how big a problem this is.

NATASHA JOHNSON: Epilepsy is a short circuit of the brain which may be caused by an injury, scar or inherited problem.

It triggers seizures like this one, recorded at Melbourne's St Vincent's hospital epilepsy monitoring unit.

While some seizures are violent and confronting others are more passive causing odd and confusing behaviour.

But like Sudden Infant Death Syndrome, just why sufferers die suddenly in their sleep remains a mystery.

PROFESSOR MARK COOK: Some people think the short circuit upsets how people's heart works or how their breathing is run and that this then causes death.

We don't understand how it comes about.

We don't understand who might be affected most often.

We don't understand whether we can protect people from it in any way.

NATASHA JOHNSON: Such a prognosis could leave sufferers like young mother Ashley Chalker feeling like they're living with a time bomb.

But Professor Cook argues that whilst there's an urgent need for more research into the syndrome, better management of seizures, lifestyle changes and more regular medical check-ups can help reduce the risk of death.

ASHLEY CHALKER: If I really, really got myself too upset over it, I could get myself in a position where I'd get depressed over it.

NATASHA JOHNSON: Do you think that people with epilepsy should know that death is a possibility?

ASHLEY CHALKER: Yes, because it's someone I know -- his brother is an epileptic and he's drinking heavily and partying heavily and I think he may even use drugs, and these are all things that you definitely shouldn't be doing if you're an epileptic because you're just asking for bad seizures to come your way and obviously inviting this sudden death.

NATASHA JOHNSON: Because the seizures can be so alarming to witness, there's enormous stigma surrounding epilepsy, and fear of losing their licence or their job prevents many sufferers from being honest with their doctors.

JAN McCALLUM-FIELD: If Lisa was honest about how many seizures she'd had in the last three months, she would have lost her licence.

And that was their main concern.

But they had have known death was a possibility, I'm sure they would have lied.

I'm sure that her life would have been more important than a drivers licence or a job.

NATASHA JOHNSON: Part of the problem too is that many doctors, particularly GPs, are unaware that death is a possibility for epilepsy patients.

PROFESSOR MARK COOK: They might understand that through accident they might cause death, but the syndrome of Sudden Unexplained Death is largely unknown in the medical world.

NATASHA JOHNSON: How dangerous is that then?

PROFESSOR MARK COOK: I think it's potentially very dangerous because it does affect how you might treat someone, how aggressively you might investigate them, how the patient themselves might approach it.

NATASHA JOHNSON: Which is why epilepsy Australia is calling for a federally funded national blueprint to ensure doctors are informed and sufferers are accessing the best treatments and services.

Particularly the 30 per cent to 40 per cent whose seizures aren't controlled.

Health Minister Kay Patterson wasn't available for an interview, but a spokesman said the Government was wary about a blueprint and believed epilepsy was already well served in this country.

RUSSELL POLLARD, EPILEPSY AUSTRALIA: I'm sure no Health Minister would want people to be dying unnecessarily.

We know from the audit in the United Kingdom that most of those deaths that occurred, that they looked at, in most of those cases people had not seen a specialist, consultant, in the last 12 months.

In fact, we could say that that happens in Australia too.

NATASHA JOHNSON: In the meantime, Jan McCallum-Field is supporting newly bereaved parents and campaigning for more awareness of SUDEP in the hope that no other parent will suffer what she has.

JAN McCALLUM-FIELD: Every year on Lisa's an anniversary I send her doctor and a specialist a photograph of Lisa and a story reminding them.

I want patients and their families to be informed that death is a possibility.

I believe we should have that right.

KERRY O'BRIEN: That report from Natasha Johnson.