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Health experts on a mission to fight rheumatic heart disease in Mparntwe

Dechlan Brennan -

The Deadly Heart Trek will launch its fourth leg in Mparntwe/Alice Springs, in a battle to address the critical health issue of rheumatic heart disease amongst Indigenous Australians.

The team brings together a coalition of paediatric cardiologists, multidisciplinary doctors, Aboriginal cultural guides and health workers to help fight a disease that is almost eradicated amongst large sections of the Australian population but remains prevalent in Indigenous communities.

Mparntwe has some of the highest rates of rheumatic heart disease (RHD) in Australia.

Two teams of 10 have been invited by the Mparntwe community, where they will visit 11 schools, as well as some town camps throughout Mparntwe to provide "critical early diagnoses" for Indigenous children who can - and may - be affected by RHD. The visit will be supported by the Central Australian Aboriginal Congress (CAAC), along with paediatric and cardiology staff from Mparntwe hospital.

Deadly Hearts Limited Board co-chair and Heart Foundation Aboriginal Lead, Vicki Wade, said Indigenous leadership and guidance underpins the direction of everything they do.

"The Deadly Heart Trek is a culturally safe program with communities' best interests at the centre," the Noongar woman said.

"We listen to the traditional owners and community leaders."

Yipiringya School skin checks with Dr Ella Huber (image:Supplied)

Ms Wade said latest data showed approximately 10,000 First Nations people are currently living with RHD, with the precursor - acute rheumatic fever (ARF).

"If we don't take serious steps to stop this disease, these numbers will likely double by 2031," she said.

Occurrences of RHD and ARF are highest in females and young people aged 5–14, with 92 per cent of ARF cases impacting First Nations people. As of December 2021, 78 per cent of RHD diagnoses (5,238) were for Indigenous Australians, with the highest prevalence rate in the NT at a rate of 984 cases per 100,000.

The Deadly Heart Trek team will undertake echocardiographic (echo) screenings (heart checks) for children to detect RHD, along with performing skin checks - and promoting skin awareness - to help people understand skin sores and their link to RHD.

Ms Wade said the issue of RHD was a commentary of the horrific discrepancies in key health metrics for Indigenous people compared to the non-Indigenous population.

"RHD is not just a health issue; it is a clear indicator of the broader cultural, social, economic, and environmental issues in communities," she said.

"Our focus is on RHD but holistically we are concentrating on the health of individuals and families, ensuring access to quality healthcare, and empowering communities with the resources and support needed to prevent and manage this disease."

In November, National Indigenous Times reported on a letter from Mudburra-Jingili girl Nambi Henderson, which was read out in parliament by Solomon MP Luke Gosling.

"Another day. Another family member dies. Another funeral. I feel as though I attend more funerals than birthday celebrations. And I'd like that to change for the sake of future generations," Nambi said in her letter.

"I don't know any of my relatives who have died of old age. They have all died from alcoholism or chronic diseases like renal disease, diabetes and RHD."

She highlighted the case of her 17-year-old "fit, tall and strong" brother, who was required to spend a lengthy period of time in hospital due to RHD.

"There's no cure. But it is totally preventable," Nambi said.

"I wish my people didn't have to suffer through these diseases. It's hard to watch. And it's even harder to say goodbye."

Yipiringya School students reading donated books with Dr Ella Hubar (image:supplied)

Deadly Hearts Limited Board Member and Paediatric Cardiologist Dr Gavin Wheaton said there was community demand and Aboriginal leadership wanting to end RHD. The Trek work was contributing to this.

"We're returning to Central Australia as experts with a strengths-based approach to do incredibly positive work, together with the local health workers and schools, supplementing current services which are underfunded and under-resourced, improving access to health services and building community resilience and self-determination," he said.

During the skin and heart tests by Deadly Heart Trek, children were able to read co-developed books donated by Telethon Kids Institute, specifically designed for each school and community centre visited.

The books included the Gija Healthy Skin Story (developed with Warmun community) and Yara Yurtu Jarrja Ngarrmanu (Good Skin) (developed with Mulan community).

Cultural guide for the trek, Arrernte man Greg McAdam, said the endeavour showed the importance of listening to, and working with, Aboriginal people.

"I would love our people to have more of an understanding of RHD, taught in a way our mob learns," Mr McAdam said.

"The Trek is an example of action that works for us, respects our rights, recognises our unique culture, and involves us directly."

The organisation has called for further increases in financial support by the Federal Government, with the cost of implementing the blueprint to end RHD, known as the Endgame Strategy, estimated to be $689 million.

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