Healthy Young People Are Dying Suddenly and Unexpectedly from Mysterious Syndrome

People aged under 40 are being urged to have their hearts checked because they may potentially be at risk of Sudden Adult Death Syndrome.

The syndrome, known as SADS, has been fatal for all kinds of people regardless of whether they maintain a fit and healthy lifestyle.

SADS is an ‘umbrella term to describe unexpected deaths in young people’, said The Royal Australian College of General Practitioners, most commonly occurring in people under 40 years of age.

The term is used when a post-mortem cannot find an obvious cause of death.

The US-based SADS Foundation has said that over half of the 4,000 annual SADS deaths of children, teens or young adults have one of the top two warning signs present.

Those signs include a family history of a SADS diagnosis or sudden unexplained death of a family member, and fainting or seizure during exercise, or when excited or startled, reported news.com.au.

Last year a 31-year-old woman, Catherine Keane, died in her sleep while living with two friends in Dublin.

Her mother Margherita Cummins told the Irish Mirror, ‘They were all working from home so no one really paid attention when Catherine didn’t come down for breakfast.’

‘They sent her a text at 11.20am and when she didn’t reply, they checked her room and found she had passed.

‘Her friend heard a noise in her room at 3.56am and believes now that is when she died.’

Ms Cummins stated that her daughter ‘went to the gym and walked 10,000 steps every day’.

‘I take some comfort in that she went in her sleep and knew no pain and I’m grateful for that. I always worried about the kids driving in the car but never saw this coming. I never thought I’d ever lose a child in my life,’

Melbourne’s Baker Heart and Diabetes Institute is developing the country’s first SADS registry.

‘There are approximately 750 cases per year of people aged under 50 in Victoria suddenly having their heart stop (cardiac arrest),’ a spokesperson said.

‘Of these, approximately 100 young people per year will have no cause found even after extensive investigations such as a full autopsy (SADS phenomenon).’

Cardiologist and researcher Dr Elizabeth Paratz said: ‘Baker’s registry was the first in the country and one of only a few in the world that combined ambulance, hospital and forensics information.’

‘(It allows you to see) people have had the cardiac arrest and no cause was found on the back end,’ Dr Paratz said.

She believes the potential lack of awareness may be due to the fact ‘a lot of it takes place outside of traditional medical settings’.

‘The majority of these SADS events, 90 per cent, occur outside the hospital – the person doesn’t make it – so it’s actually ambulance staff and forensics caring for the bulk of these patients,’ Dr Paratz said.

‘I think even doctors underestimate it. We only see the 10 per cent who survive and make it to hospital. We only see the tip of the iceberg ourselves.’

For family and friends of victims, SADS is a ‘very hard entity to grasp’ because it’s a ‘diagnosis of nothing’, Dr Paratz added.

Dr Paratz said that from a public health perspective, combating SADS was ‘not as easy as everyone in Australia getting genetically screened’ as scientists were still not 100 per cent clear on ‘what genes cause this’.

‘The best advice would be, if you yourself have had a first-degree relative – a parent, sibling, child – who’s had an unexplained death, it’s extremely recommended you see a cardiologist,’ she said.