A new study has found children in East Timor have among the highest rates of rheumatic heart disease in the world, with researchers estimating up to 10,000 young people could have the preventable, deadly disease.
Work is underway to train local Timorese health workers in picking up undiagnosed rheumatic heart disease, in order to get as many children as possible on lifesaving penicillin treatment.
A group of cardiologists and paediatricians from around Australia began the study in 2016, screening 1,400 children and young people in schools in Dili and Emera.
The results, published in the Medical Journal of Australia, show 3.5 per cent had definite or borderline rheumatic heart disease, with girls over-represented in the numbers.
Project lead Dr Josh Francis from the Menzies School of Health Research said one in 20 girls had the illness, compared to one in 50 boys.
"If that prevalence of 3.5 per cent represents the whole country ... there's half-a-million children in Timor Leste, so the burden of rheumatic heart disease is enormous," Dr Francis said.
"There could be between 5,000 and 10,000 kids with rheumatic heart disease."
The patients identified with mild or moderate conditions were treated with monthly penicillin injections to stop the progression of the disease, giving the heart a chance to recover.
"What we've seen from these kids in the prevalence study is that a number of them have already started to improve in their rheumatic heart disease," Dr Francis said.
If the disease progresses to severe and the need for heart surgery goes unmet, the preventable disease can be fatal.
"You can stop the progression, you can give treatment, you can stop kids from becoming unwell, getting severe rheumatic heart disease, stop them from needing heart surgery, stop them from dying," Dr Francis said.
Timorese paediatric registrar Dr Mario Noronha said many children who come to hospital in East Timor already have late stages of the disease.
"Because most of them still believe in traditional healers so this is a trouble for us to get the early stage," he said.
Dr Noronha is on a six-month rotation in Darwin to learn how to detect the early stages of the disease and to raise awareness of symptoms to look out for among Timorese people back home.
"Through this rotation that I'm doing in this hospital [Royal Darwin Hospital] it will be very worthwhile in the future to prevent our children from this catastrophe," he said.
Dr Francis said the study's figures were the tip of the iceberg, and may be conservative, because only children who attended school were screened.
"There is a massive burden of undetected rheumatic heart disease [in East Timor] and it won't present to the clinics until it's too late," he said.
"So for me there's a big priority to continue the work that we've started."
'V-scanners' increasing chance of diagnosis
Part of that is mobilising a workforce of Timorese doctors, nurses and health workers who have been trained by Australian doctors both in East Timor and in Darwin.
The Timorese staff monitor those children identified as having rheumatic heart disease and administer monthly penicillin.
It is now hoped they will continue screening for undiagnosed disease by using a hand-held echocardiography devices.
Several of the devices, known as v-scanners, were donated to the project by the Humpty Dumpty Foundation. They enable health workers to make a diagnosis that previously would have only been done by a specialist cardiologist.
East Timor currently has one cardiologist and one echocardiography machine in the national hospital for a population of 1.3 million people.
"The portability of this machine is extraordinary," Dr Francis said.
"You can stick it in your pocket and head out to a remote community in the Northern Territory or somewhere in a district of Timor Leste without the problems that come with carrying big machinery."
Now, a further 2,000 to 3,000 students in East Timor will be screened over the next two weeks, by a team including cardiologists, doctors and community workers from Australia and East Timor.
The hand-held devices will be used in the next round of screening under the supervision of cardiologists, in the hope Timorese workers can use them independently in the future, both in schools and homes, with the ultimate aim of revolutionising access to screening services.
"We're looking for rheumatic heart disease, hoping to get kids onto treatment to prevent the progression of it, but also hoping to demonstrate a new and effective way of screening that involves local health workers," Dr Francis said.
For the first time, Aboriginal health workers from Arnhem Land in the Northern Territory will join the team in East Timor, after being trained in how to use the v-scanners.
The Arnhem Land community workers had been part of a pilot screening project during which 500 school children were screened and members of the community were trained in techniques for early detection of rheumatic heart disease.