When Kenya McAdam's joints started hurting when she was 15, she thought it was due to a recent soccer game, or growing pains.
But within a week she had been rushed from Kununurra in the Kimberley to a Darwin hospital, where she suffered a cardiac arrest.
She was diagnosed with rheumatic heart disease (RHD) and underwent heart surgery, which she may need every decade for the rest of her life.
Australia has one of the highest rates of RHD in the world, with indigenous people 64 times more likely to contract it as a result of weakened immune systems due to poverty and deprivation.
A seminar being held in Darwin this week is training health workers to be on the lookout for the preventable illness.
Acute rheumatic fever is caused by a reaction to a streptococcus bacteria, inflaming the heart, joints, brain and skin, and if untreated it can cause RHD, where the heart valves are stretched or scarred, interrupting blood flow.
"I didn't realise how sick I was at first, and then when I was told, I went `wow'. All of that inside of me and I didn't even know," Kenya, now 18, told AAP on Tuesday.
Her mother Cherie says she had persistent sore throats as a child, which are a symptom of the disease that doctors failed to diagnose.
Kenya's brother Luke has rheumatic fever and her youngest sister Mercii has a congenital heart condition.
Many Australian medical professionals have never seen a case of acute rheumatic fever because it has largely been eradicated in urban settings, said Professor Bart Currie, director of RHD Australia.
Almost half a million new cases are identified each year around the world, especially in the Pacific region, and it kills 230,000 people annually.
Cherie and Kenya are urging health professionals to be more aware.
"Women, we share the same heartbeat as our kid," Cherie said.
"We know when something is up ... If she keeps coming back (to the doctor) you listen to her, and dig deeper."
An earlier diagnosis might have prevented Kenya's condition becoming the disease, which will limit her in terms of employment and physical activity, Cherie said.
Experts are also converging in Darwin for the largest study on RHD and pregnancy conducted across Australia and New Zealand.
The disease is often undiagnosed but is unmasked by pregnancy when women's hearts are under stress, and can make them very unwell.
The study is ongoing, but preliminary results show that a limited access to specialist health care in remote communities, a high turnover of staff and multiple layers of health records are preventing pregnant women from getting the care they need.
But in Kununurra now when children present with sore throats, they immediately receive injections to battle possible rheumatic fever, said Cherie.
"We've been instigators of change for the better so other families don't have to go through what we've been through," she said.
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