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        Rheumatic Heart Disease

        Rheumatic heart disease (RHD) is the most important cause of acquired cardiovascular disease in children and young adults. Virtually non-existent in most of Australia, it still predominantly affects Aboriginal communities.

        What causes Rheumatic Heart Disease (RHD)?

        When a child gets a group A streptococcal infection of the throat (known as strep throat), their body’s immune system, in trying to fight that infection, produces antibodies. Sometimes these antibodies, in addition to killing the strep, can damage their heart. Acute rheumatic fever (ARF) can occur following an untreated strep throat infection and can cause irreparable damage to the major cardiac valves, known as rheumatic heart disease.

        How common is RHD?

        RHD is most often seen in developing nations, yet Australia has some of the highest rates in the world. Aboriginal and Torres Strait Islander people live with ARF and RHD at rates 60 times higher than non-Indigenous Australians, and most at risk of developing the disease are Aboriginal and Torres Strait Islander children aged 5 - 14 years old. 

        At present, there are over 5,000 Aboriginal and Torres Strait Islander people living with ARF or RHD. Without urgent action, it's estimated that by 2031: 

        • Another 8,667 Aboriginal and Torres Strait Islander children will develop RHD or its precursor, ARF;
        • $273 million will be spent on their healthcare; and 
        • 663 of these people will die. 

        What are the risk factors of RHD?

        Certain living conditions make streptococcal infections more likely. Known risk factors include poverty, overcrowding and limited access to medical care. It is thought that the bacteria may also enter the body through skin cuts and abrasions - so skin sores in a child should never be ignored.

        What are the symptoms?

        Damaged heart valves found in RHD mean the heart cannot work normally. Symptoms include heart murmur, chest pain, breathlessness, and swelling of face and legs. RHD can result in heart failure and premature death.

        How is it diagnosed?

        Rheumatic fever is not a straightforward diagnosis - there’s no single test but rather a checklist of symptoms, including heart inflammation, fever, painful joints and skin rash. Early diagnosis and taking preventative antibiotics can stop it developing into RHD. People with RHD require ongoing medical care, antibiotic treatment and possibly cardiac surgery.

        The only effective way to stop acute rheumatic fever recurring is to have monthly penicillin injections, for 10 years or until the patient has turned 21.

        * See a doctor if your child shows any signs of strep throat, skin sores or symptoms of rheumatic fever.

        Rheumatic Heart Disease teams

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        Videos

        Video

        Endgame Strategy: what it means for you

        Endgame Strategy: what it means for you

        END RHD is a community-driven collaboration between communities, clinicians, Aboriginal Community Controlled Health Organisations, and government and non-government organisations who have developed a blueprint to eliminate rheumatic heart disease (Endgame). A group of Champions4Change – a culturally safe program for people living with acute rheumatic fever (ARF) and RHD -- looked at how the priorities should be communicated with communities. The result is the Endgame community resources.

        Video

        Tenaya's Story

        Tenaya's Story

        Aged just seven, Tenaya underwent emergency life-saving surgery to repair her heart valve as a result of developing rheumatic heart disease (RHD), the leading cause of cardiovascular inequality for Aboriginal and Torres Strait Islander children in Australia. Now, through the power of collaboration between researchers, the Aboriginal Community Controlled Health Sector, clinicians and government, we have the RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. Read more: telethonkids.org.au/rhd-endgame

        Video

        Boom Boom

        Boom Boom

        Written for kids, by kids from the remote Aboriginal community of Barunga, 'Boom Boom' aims to teach children how to prevent deadly rheumatic heart disease (RHD).

        Video

        Laqueisha's Story

        Meet Laqueisha and Jonathan

        For more than two decades, paediatrician and researcher Professor Jonathan Carapetis has been working on rheumatic heart disease. Great strides have been made but there is still a long way to go to help kids like Laqueisha. Diagnosed with RHD at five years of age, Laqueisha has undergone eight hours of heart surgery and will endure painful injections every month until she's 18.

        Our research impact

        The RHD Endgame Strategy: The Blueprint to Eliminate Rheumatic Heart Disease in Australia by 2031

        In 2014, The End Rheumatic Heart Disease Centre of Research Excellence (END RHD CRE) was established at Telethon Kids Institite to address the urgent need for a comprehensive, evidence-based plan to eliminate rheumatic heart disease across Australia.

        Bringing together leading experts from 16 institutions across Australia and backed by a grant from the National Health and Medical Research Council (NHMRC), the END RHD CRE synthesised the collective experience of communities, clinicians, Aboriginal Community Controlled Health Organisations, and government and non-government organisations – as well as more than 25 years of research – to tackle this need head on.

        The result is The RHD Endgame Strategy: The blueprint to eliminate rheumatic heart disease in Australia by 2031. Outlining the best existing evidence-based strategies to prevent new cases of RHD in Australia and improve the lives of those already living with the disease, The RHD Endgame Strategy was launched in September 2020 and can be viewed here.

        Finding a vaccine

        While treatments for patients are improving, it is far better to stop the disease from occurring in the first place. Researchers at the Telethon Kids Institute have been collaborating with others from a range of national and international institutions to develop a vaccine to protect against group A strep infections.

        Another research program is developing a reformulation of penicillin that is less painful and more appropriate for those who require treatment and protection for rheumatic fever and RHD, with the aim of increasing the number of patients being successfully managed.

        Living with RHD

        There is also more focus on talking to people affected by RHD to understand the experience of living with the disease. This will guide the development of more appropriate prevention and management strategies.