Rheumatic heart disease is rare and preventable, but Indigenous Australians are 19 times more likely to die from the disease.
A documentary, filmed over two years across Australia, highlights the unusually high prevalence of rheumatic heart disease among the nation’s Indigenous community.
It focused on remote communities in the Northern Territory, where about 98 per cent of cases are Indigenous, and of those 58 per cent were aged between five and 14.
The documentary ‘Take Heart’, opens with a question: “What disease starts with a sore throat in children, and ends in open heart surgery, stroke, heart failure and premature death?"
It then takes a look into the lives of four young Indigenous Australians diagnosed with the chronic heart disease, highlighting a gaping healthcare hole in the Top End.
Darwin-based paediatric cardiologist Bo Remenyi said rheumatic heart disease was 100 per cent preventable.
“Rheumatic heart disease is a disease of poverty," Dr Remenyi told SBS News.
"In Australian context, it's related to poor housing, overcrowding, poor education.
“The saddest part of this is it is most common in the world in our own backyard - in Indigenous communities.”
Rheumatic heart disease is the end result of a contagious strep-germ throat infection that has been left untreated and advances beyond acute rheumatic fever.
Dr Remenyi said she feared the condition had been normalised in the Top End, where high rates of Indigenous children were diagnosed.
She said the majority of those diagnosed will suffer heart failure within four years.
“It’s all about recognising a sore throat, and treating it appropriately, with antibiotics, to stop the auto-immune reaction,” Dr Remenyi said.
“Strep-germ is contagious, so you spread it from one child to another child.”
Belyuen man Liddywoo Marni, 18, first developed symptoms as a three year old and after three open heart surgeries now has a mechanical valve.
“They told me that I had a bug in my heart,” he said of his diagnoses.
“I felt weak, and I felt sore throat.”
He has to have life-saving, blood-thinning medication daily and now teaches other kids in his community about the dangers.
'Take Heart' director Mike Hill has travelled the world filming documentaries, but couldn’t believe what was happening in his own country.
“The big take out is, it shouldn't have to go to surgery level, because it can be stopped at a very early stage,” he told SBS News.
Although the condition has almost disappeared in non-Indigenous populations across the developed world, it still affects 30 million young people globally.
It is highly prevalent in parts of Africa, Asia, South America and New Zealand’s Maori community.
In Australia, refugees and those living in low socio-economic communities, are also at risk.
'Take Heart' is screening around the country.