Experts and families of healthy, young people who have suddenly died are speaking out about Sudden Adult Death Syndrome, or Sudden Arrhythmic Death Syndrome, known more commonly as SADS.
SADS, according to the Royal Australian College of General Practitioners (RACGP), “is an umbrella term to describe unexpected deaths in young people (usually 40 years of age), whose cause of death following post mortem examination is ‘undetermined’ or ‘unascertained.’”
“She worked for an advertising company and was doing really well,” said Margherita Cummins, whose daughter Catherine Keane died suddenly at age 31. “She went to the gym and walked 10,000 steps every day.”
Cummins told the Irish Mirror last month that her daughter’s flatmates found Catherine’s dead body after she 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,” the mother recalled. “Her friend heard a noise in her room at 3.56am and believes now that is when she died.”
Another family lost their healthy 19-year-old son from the mysterious disease in April of 2021, 7News.com.au highlighted.
“As most of you know on the 2nd of April 2021 we tragically lost our beautiful Son and Brother Liam to Sudden Adult Death Syndrome,” a fundraising page for the teen said. “Liam was just 19 years of age a vibrant, fit, healthy young man.”
“Liam had everything going for him in life he was learning to drive, looking forward to planned concerts with his friends, many a road trip out and planning the new University life, when everything was cruelly taken from him,” the post continued. “All his hopes and dreams gone and stolen from us as well!”
Dr. Elizabeth Paratz, from Melbourne’s Baker Heart and Diabetes Institute, said the Victorian registry shows “there are approximately 750 cases per year of people aged under 50 in Victoria suddenly having their heart stop.”
“Of these, approximately 100 young people per year will have no cause found even after extensive investigations such as a full autopsy,” she added.
Paratz noted that “the numbers had remained tragically consistent over the years,” according to 7News.com.au.
“This has always been a really tragic thing that’s been around, and we haven’t seen a big change in numbers in recent years,” she said. “It’s always been something that affects people in their life with no warning.”
“So, if there is any family history, it is a very good idea to get a screening,” she advised.
Medical Daily noted that approximately 210,000 people “die suddenly and unexpectedly each year due to sudden cardiac arrest in the United States,” citing the American Heart Association.
RACGP says on their webpage that “the most common SADS conditions include genetic arrhythmia syndromes such as long QT syndrome, catecholaminergic polymorphic ventricular tachycardia (CPVT) and Brugada syndrome.”
“These conditions follow an autosomal dominant inheritance pattern,” RACGP details. “Therefore, first-degree relatives (ie parents, siblings, children) of an individual who has a genetic arrhythmogenic disorder are at a 50% risk of also having a gene variant for the condition, and thus, at risk of developing the condition. All these conditions show considerable clinical variability within families and have incomplete penetrance.”