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Families Aren't Being Warned About 'Cruel' Sudden Epilepsy Deaths

Grieving parents who have lost a child to epilepsy say they weren’t warned about the risk of sudden and unexpected death associated with the disorder.

Now they’re fighting for greater awareness to prevent other families from experiencing similar heartache.

Jackie Harper dedicated her life to her adorable and funny son Josh, but she never thought she'd lose him to something she'd never heard of.

Josh lived with severe epilepsy for 24 years, having relentless and uncontrolled seizures and suffering falls up to 14 times a month.

Every time he was in the shower, in the bath or near concrete, Jackie said she was two steps behind him in a constant state of worry.

"I always thought he might hit his head, and that's how he could die," she told 10 daily, speaking of her only child.

Jackie Harper and her son Josh would often travel together. Image: Supplied

Then, one morning in 2017, came the phone call: Josh was being given CPR at his care facility in Perth.

"He came home every weekend, but he hadn't come home that night because I had a severe flu. I rushed to hospital and they said he'd passed away," Jackie said.

Josh was 31 when he died in his bed. His doctor was confident his death was due to SUDEP (Sudden Unexpected Death in Epilepsy).

Jackie said it had never come up in her experience with Josh's epilepsy.

"I was a proactive mother -- I turned every stone that would have helped him, but to lose him this way ... it's almost quite cruel," she said.

Josh Harper died in 2017, aged 31. Image: Supplied

SUDEP is when a person with epilepsy dies suddenly and prematurely, and there is no apparent cause of death.

SUDEP related deaths aren't often witnessed, with many of them occurring overnight during sleep, according to Epilepsy Action Australia (EAA), the largest provider of services for people living with the disorder.

EAA CEO Carol Ireland said there may be obvious signs a seizure has happened in an epilepsy sufferer though this isn't always the case.

"In most cases, the person is found to have passed away in bed while they were sleeping," she said.

The group estimates there are about 300 epilepsy-related deaths each year in Australia, with SUDEP occurring in one in 1,000 adults and one in 4,500 children.

READ MORE: Grieving Dad's Heartbreaking Message Of Regret After Son Dies From SUDEP

But neurology professor Terry O'Brien, who is also the President of the Epilepsy Society of Australia, said it should not be overlooked.

"In terms of a significant cause of death in a young or middle-aged person with epilepsy, it is the most common cause," he told 10 daily.

O'Brien said the biggest risk factor associated with SUDEP is ongoing and uncontrolled seizures.

Young males aged between 20 and 40 years have been identified as an at-risk group, though O'Brien said this is because this age group are less reliable with taking their medications.

"A lot of minimising the risk of SUDEP is about discovering ways to control and treat epilepsy better," he said.

'Families Aren't Being Told'

In her 13 years with EAA, Ireland has watched families endure the heartbreak of losing a loved one to SUDEP.

"It's heart-wrenching ... the anguish is something you cannot describe," she told 10 daily.

She claimed almost every family who had connected with the group said they had never heard of SUDEP before their loved one's death.

"I think a lot of them feel guilty and upset that perhaps they would have been able to do something if they had," she said.

Karin Ursino had known about SUDEP but claimed it was brushed aside.

Her son Michael was diagnosed with epilepsy when he was 18, after finding out he had a malignant brain tumour.

"The epilepsy was a side effect of the treatment from the brain tumour," Karin told 10 daily.

"And so we started out on another horrible journey."

Karin Ursino's son Michael was diagnosed with epilepsy when he was 18. Image: Supplied

Michael's epilepsy started out with 'absence' seizures -- where he would zone out and smack his lips -- that became uncontrolled. Soon after this he became considered as high-risk for SUDEP.

Karin approached a specialist after hearing about SUDEP in a media report. But she claimed the specialist "brushed her off".

"He said, 'you don't need to worry about it'. That was the end of the conversation," she said.

"We ended up with a different specialist, and didn't raise it again."

In 2011, ten days after Michael's 20th birthday, Karin found him dead in his bed.

While his autopsy report was semi-inconclusive, his death was put down to SUDEP.

"We were upset that I had looked it up, and we had been given that information," Karin said.

"As his parents, we certainly would like to have known about it (SUDEP), and maybe investigated whether there were other steps that we could have taken to try and prevent it." 

Karin's son Michael died in 2011, days after his 20th birthday. Image: Supplied

Professor O'Brien believes bringing up SUDEP is a vital part of informing patients about the need to treat their epilepsy, but said doctors are often reluctant to do so.

"I think some doctors are nervous about bringing it up because they don't want to frighten the patient," he said. 

"But I think there are some who themselves aren't aware of the importance or frequency of SUDEP.

"I think it is a mistake. If we give patients that information sensibly, it empowers them more than if they don't know about it," he said. 

Jackie agreed, saying she would prefer to have known about the risks.

"I would have known that I had done the best I could for him (her son Josh), but instead I feel like I let him down," she said.

"I feel like the system let us down."

Jackie Harper (pictured with her son, Josh) said she would have preferred to know about the risks of SUDEP. Image: Supplied
'We Want To Start The Conversation'

Today, October 23, is SUDEP Action Day.

To mark it the EAA has launched an Australian-first online tool to increase awareness of SUDEP among health professionals and patients.

The 'SUDEP and Seizure Safety Checklist' was originally developed in the UK. It will now be made available in Australia.

Ireland said it's a simple, evidence-based clinical tool neurologists, GPs and other health practitioners can use to discuss and monitor risk factors with their patients.

"We want to get the conversation out there and happening in a way that isn't scary," she said.

The checklist is available online for any health practitioner registered with the Australian Health Practitioner Regulation Agency (AHPRA).

"If we can save one life through this work, it will have been worthwhile. Hopefully, we can start to save many," Ireland said.

For Jackie, the checklist is "bittersweet".

"It's great that this will be out there for others with epilepsy," she said.

Contact the author: ebrancatisano@networkten.com.au