The heartbroken mother of a fit and healthy 31-year-old woman who died suddenly in her sleep has issued an urgent appeal to young people.
Young people with a particular family history are advised to have their heart screened even if they are fit and healthy, as they may be at risk for sudden adult death syndrome.
Sudden Adult Death Syndrome, or Sudden Arrhythmia Death Syndrome (SADS), is an “umbrella term to describe unexpected deaths in young people”, usually under the age of 40, when an autopsy cannot find any obvious cause of death, according to the Royal Australian College of General Practitioners (RACGP).
Although national figures are not available, the Baker Heart and Diabetes Institute in Melbourne is developing the country’s first SADS registry, which it hopes to eventually roll out nationwide.
“In our register, there are approximately 750 cases a year of people under the age of 50 in Victoria whose heart suddenly stops (cardiac arrest),” a spokeswoman said. “Of these, about 100 young people a year will have no cause found even after extensive investigations such as a full autopsy (the SADS phenomenon).”
Cardiologist and researcher Dr Elizabeth Paratz said Baker’s register was the first in Australia and one of the few in the world to combine ambulance, hospital and forensic information.
“(It lets you see) that people have had cardiac arrest and no cause has been found on the back,” she said.
Dr Paratz said the lack of awareness of this issue was likely due to the fact that “a lot is happening outside of traditional medical settings”.
“The majority of these SADS events, 90%, happen outside of the hospital – the person is not recovering – so it’s actually the ambulance and forensics staff who deal with the bulk of it. of these patients,” she said.
“I think even doctors underestimate it. We only see the 10% who survive and make it to the hospital. We ourselves see only the tip of the iceberg.
For the family and friends of the victims, the SADS is a “very difficult entity to apprehend” because it is a “diagnosis of nothing”.
“All you know is that it wasn’t about drugs, suicide, trauma or heart attack,” Dr. Paratz said. “You always wonder what it was.”
She pointed out that the terms “heart attack” and “cardiac arrest” are often confused.
A heart attack refers to a blockage of the heart vessel, while a cardiac arrest means that the heart has stopped.
“If someone has a heart attack and you do an autopsy you might see a big clot, that’s a positive finding, but when someone has had one of these SADS events, the heart is blank,” said she declared. “It’s really hard to know what to do.”
Last month, the heartbroken mother of a young Irish publicist who died in her sleep urged parents to have their children screened for SADS if there was a family history of heart disease.
Catherine Keane, 31, was found dead by her housemates last year.
“She was living with two friends in Rathmines in Dublin and they were all working from home, so no one was really paying attention when she wasn’t coming down for breakfast,” Margherita Cummins told the Irish mirror.
“They texted her at 11.20am and when she didn’t reply they checked her room and found she had died. Her friend heard a noise in her room at 3.56am and now thinks it’s it was then that she died.
Ms Cummins said her daughter “went to the gym and took 10,000 steps every day”.
“She used to call me on a walk and chat the whole time,” she said.
“I’m comforted that she fell asleep and felt no pain and I’m grateful for that. I was always worried about the kids driving the car, but I had never seen this come in. I never thought I would lose a child in my life.
In February, another mother spoke about the death of her teenage son from SADS in 2021.
Liam Doherty, 19, of Cranford, Ireland, has died last aprilleaving his family heartbroken.
“Nothing could have prepared us for what happened on that day of April 2 or what potentially lay ahead of us,” her mother Adele Doherty wrote on a fundraising page for the Mater Hospital Foundation.
“It has become our journey into many uncharted waters, learning the depths of SADS, trying to figure it all out and process it all.”
In another tragic case, a new bride was found dead by her mother-in-law in a British tanning salon last month.
New Zealanders Piata Tauwhare30, reportedly collapsed shortly after starting an 11-minute tanning session in Lextan, South Wales.
She was believed to have suffered from SADS, collapsing to the ground in the vertical tanning booth where she was said to have remained undiscovered for almost two hours.
“Piata was the most wonderful and beautiful person in the world. She lit up my life and made me a better person,” said her husband Ifan Jones, 23. The sun.
“We had so many plans and so many things we wanted to do with our lives. Our hearts are broken without her and she died in the most appalling and tragic way. The fact that she remained undetected for nearly two hours breaks my heart.
The US-based company SADS Foundation says they are “genetic heart conditions that can cause sudden death in young, apparently healthy people.”
The most common SADS conditions include genetic arrhythmia syndromes such as long QT syndrome, catecholaminergic polymorphic ventricular tachycardia (CPVT), and Brugada syndrome, according to the RACGP.
“SADS conditions arise because the heart’s electrical system isn’t working properly, so the heart beats with an abnormal rhythm,” explains the SADS Foundation. “These conditions can be treated and deaths can be prevented.”
In the United States, approximately 210,000 people die suddenly and unexpectedly each year due to sudden cardiac arrest, according to the American Heart Association.
The SADS Foundation says that more than half of the 4,000 SADS deaths each year of children, adolescents or young adults have one of two main warning signs. These are a family history of being diagnosed with SADS or sudden unexplained death of a family member, and fainting or seizures during exercise, or when excited or startled.
Dr Paratz said that from a public health perspective, tackling SADS was “not as easy as everyone in Australia getting genetically tested” because scientists were still not 100 clear. % on “what genes cause it”.
“The best advice would be that if you have a first degree relative yourself – parent, sibling, child – who has had an unexplained death, it is highly recommended that you see a cardiologist,” he said. she declared.
“Anyone else (see a cardiologist) if you have heart symptoms like chest pain, shortness of breath, or can’t keep up with friends while exercising or walking.”
Cardiology researchers have previously suggested that the complex effects of pandemic lockdowns would likely lead to more deaths from heart disease – a phenomenon dubbed “post-pandemic stress disorder” by psychologists in the UK.
Post-pandemic stress disorder is not an officially recognized mental health condition.
Coronary heart disease is the biggest cause of death in Australia, accounting for 17,731 deaths in 2019, according to the Australian Bureau of Statistics.
Health experts have recently urged more Australians to get their checked heartsfollowing a string of high-profile deaths, including cricketing icon Shane Warne and Labor Senator Kimberley Kitching.
Meanwhile, health Hearts4Heart charity urges Australians to “be smart with their hearts” ahead of Heart Failure Awareness Week from June 27 to July 3.
“Despite the name, heart failure does not mean the heart has stopped or failed, it means the heart ‘fails’ to keep up with the demands of the body,” the group explains.
“Heart failure affects 500,000 Australians and kills around 61,000 people every year, or around one person dying of heart failure every three hours, eight deaths a day.”
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