Two brave, young First Nations people will lead an Australian delegation to the World Congress on Rheumatic Heart Disease (RHD) next month as part of a renewed movement to improve awareness of the disease and it’s shocking impact on young First Nations peoples.
Kenya McAdam, 27, and Henrique Thomas, 20, are Heart Foundation Champions4Change.
Champions4Change is a program led by the Heart Foundation’s First Nations Heart Health team which aims to empower First Nations people with lived experience of RHD to raise awareness, educate, inform and inspire action on RHD.
RHD is a condition that damages heart valves and can lead to premature death if left untreated. Tragically in Australia, 3 out of 4 diagnoses of RHD and the rheumatic fever which causes it are among First Nations peoples. And every week two First Nations people die from RHD.
Kenya and Henrique are being sponsored by the Heart Foundation and two philanthropic organisations, The Snow Foundation and Red Dawn, to attend the World Heart Federation’s World Congress on Rheumatic Heart Disease in Abu Dhabi this November 1st to 5th.
They will be leading a delegration of 78 Australian RHD and First Nations experts with the goal of raising awareness of how RHD – despite being wiped out in urban areas – continues to be a challenge to end in remote First Nations communities.
The pair – who have not left Australia before - are passionate about sharing their personal stories of living with RHD and making a case for the support needed to help community-led efforts end RHD in Australia.
“Most Australians believe heart disease is something that gets you in old age,” said First Nations Health Lead and Noongar woman, Vicki Wade.
“But as our young Champions will tell you, rheumatic heart disease is tragically a serious health concern for First Nations people including those at much younger ages. Our children are being diagnosed as early as three years old.
The grassroots effort to end RHD in Australia
Heart Foundation CEO David Lloyd commended the National Aborignal Community Controlled Organisation (NACCHO) for its recent appointment as the lead agency of Australia’s rheumatic fever strategy.
He said community-led efforts were the key, and in many case were already having an impact.
“RHD needs more attention from Australians because the rheumatic fever strategy has the answers, we just need generate a better understanding of what it is, why exists, and how easy it is solve – if we wish,” Mr Llloyd said.
“We are rapt at the Heart Foundation to be working closely with NACCHO to improve the heart health of Aboriginal and Torres Strait Islander peoples.
“It is our hope that through this strong approach to self-determination that Australia finally achieves its goal of eradicating RHD in Australia by 2031.
“The well-being of future generations depends on it.”
BACKGROUND: ARF and RHD
What is acute rheumatic fever (ARF)?
- Acute rheumatic fever is an illness caused by an abnormal immune reaction to Streptococcus pyogenes (Strep A) infection of the throat or skin.
- Acute rheumatic fever can cause sore joints, rashes, uncontrollable jerky body movements, fever, and heart inflammation.
- Children aged five to 14 years are most commonly affected by acute rheumatic fever. Aboriginal and/or Torres Strait Islander peoples are 123 times more likely to be diagnosed with acute rheumatic fever than non-Indigenous people of the same age.
- Acute rheumatic fever a preventable disease is treated with regular injections (every 21 to 28 days) of penicillin.
What is rheumatic heart disease (RHD)?
- A severe episode of acute rheumatic fever, or multiple recurrent episodes, can lead to permanent damage to the heart valves, and cause a condition known as rheumatic heart disease.
- Rheumatic heart disease is a chronic, disabling condition that can lead to repeated openheart surgery. may be required.
- Having rheumatic heart disease can lead to a number of other heart-related conditions, many which are life-threatening. These are detailed below.
- Heart failure: The major cause of death and disability from rheumatic heart disease is heart failure.
- Stroke: People with rheumatic heart disease are at risk of stroke because of blood clots which can form in the heart and subsequently block blood flow to parts of the brain.
- Abnormal heart rhythm (arrhythmia) – atrial fibrillation: People with rheumatic heart disease are at risk of atrial fibrillation because heart valve damage changes the structure of the heart.
- Infective endocarditis: Infective endocarditis is an infection of the heart valves. It is more likely in rheumatic heart disease, because valves that are already scarred or damaged are more likely to become infected.
- Complications in pregnancy: Pregnant women with rheumatic heart disease and their unborn baby are at risk of illness or death during pregnancy and labour.
What is causing this?
The high rate of rheumatic heart disease among our First Nations peoples is largely due to increased exposure to Strep A, as well a crowded living conditions, combined with a lack of access to adequate medical care.
ABOUT THE WORLD CONGRESS ON RHEUMATIC HEART DISEASE
The World Congress on Rheumatic Heart Disease, hosted by the World Heart Federation in partnership with other leading organizations in the field, will bring together global experts on rheumatic heart disease (RHD), including researchers, practitioners, patients and advocates, to discover the latest research, engage with global leaders, and explore practical and effective solutions to ending rheumatic heart disease once and for all.
Virtually eradicated in large parts of the world, RHD continues to have a devastating impact on vulnerable communities in sub-Saharan Africa, the Middle East, South-East Asia and the Western Pacific, affecting 40 million people and claiming more than 300,000 lives every year.
Australia is taking a delegation of 78 experts and leaders to share stories of of lived-experience and efforts to eradicate RHD.
It follows a pre-World Congress conference held in Adelaide two months ago.
That conference brought together more than 100 key people including Aboriginal Community Controlled services, First Nations community health leaders, heart sector experts, supporting bodies, and the Champions4Change to reignite Australia’s efforts to end RHD.
- Rheumatic Heart Disease was wiped out of urban Australia decades ago but persists in remote First Nations communities.
- It's diagnosed in kids as young as three years.
- Two young RHD survivors will lead a delegation of Australian experts and First Nations leaders to Abu Dhabi next week to raise awareness of this.
- Community-led efforts,, such as remote laundries, are having an impact - but more support is needed.
Shaun Inguanzo, Media Manager
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