Acute rheumatic fever (ARF) and rheumatic heart disease (RHD)

What is acute rheumatic fever?

Germs called group A Streptococcus (also known as Strep A) can cause infections in the throat or in skin sores.

For some people, the body’s immune system gets confused. It fights the strep A germ, but it also attacks healthy parts of the body - like the heart, joints, skin, and brain. This reaction causes an illness called acute rheumatic fever (also known as ARF).

What are the signs of ARF?

• Pain and swelling in the joints like knees, hips, ankles, wrist and elbows.
• Sometimes people are in so much pain, they can’t walk.
• Feeling tired
• Fever, headache, hold and cold chills
• Jerky movements you can’t control that go away when you are asleep caused by swelling in the brain
• Swelling of the heart
• Lumps under skin and rash ( these are rare)

You may experience one or a combination of these symptoms. All of these will go away eventually, except for any damage in the heart. When this damage to the heart happens, this is called rheumatic heart disease, or RHD.

See your doctor or healthcare professional if you experience ANY of these symptoms. 

What is rheumatic heart disease?

Rheumatic heart disease (RHD) is the permanent damage to one or more of the heart’s valves.

This happens after a person has acute rheumatic fever (ARF) one or more times.

The more times someone gets ARF, the more likely they are to get RHD.

If left untreated, it can cause further damage to the heart valves, which can lead to life-threatening conditions like heart failure, stroke and abnormal heart rhythms, or death.

Healthy vs unhealthy valve

There are four valves in the heart which open and close to keep the blood pumping in one direction. If the valves are damaged, the blood does not flow properly.

Who is most likely to get ARF and RHD?

• Aboriginal and Torres Strait Islander, Maori and Pacific Islander peoples are more likely to get acute rheumatic fever and rheumatic heart disease.
• Young ones aged 5-14 are more likely to get acute rheumatic fever. Adult can get this too.
• Females are more at risk of getting ARF and RHD.

How to prevent acute rheumatic fever and rheumatic heart disease

Acute rheumatic fever can be prevented by:

• Early treatment – sore throats and skin sores need to be treated by going to the clinic.
• Antibiotic medicine is given as one injection or as tablets for a few days. It is very important to finish all tablets.
• Keeping home and skin healthy and clean.

Rheumatic heart disease can be prevented by:

• An antibiotic injection is usually given every 21-28 days to act as a shield protecting the heart and to stop acute rheumatic fever coming back.
• Future sore throats and skin sores should be treated as soon as possible.
• Any symptoms of acute rheumatic fever should be checked by a doctor or other health professional as soon as possible.

Getting a check-up at the clinic for sore throats or skin sores can stop big problems before they start.

Champion4Change Stories

The Heart Foundation acknowledges those with lived experience of acute rheumatic fever and rheumatic heart disease, as well as their carers and communities.

This recognition is central to the work of the Heart Foundation’s vision of ending rheumatic heart disease. Lived experience expertise are critical to informing the development of effective prevention strategies, programs, and resources.

Eddie’s story

A sore throat that leads to heart disease

Eddie Masina’s journey with RHD started at just five years old.

“It was a typical morning,” Eddie recalls. “I had breakfast, the next thing I knew I couldn’t feel my legs.” Eddie was rushed to hospital in Cairns where he was diagnosed with acute rheumatic fever.

Repeat infections during his childhood led to RHD, and between the ages of 12 and 34, Eddie endured five open heart surgeries. Aged just 18, he suffered his first stroke, followed by another at age 20. He was lucky to survive.

“Years ago, my mum told me that she had a sister who died from acute rheumatic fever at the age of 16. My brother has a daughter, and it also looks like she might have it now,” says Eddie.

“I just want to see this disease ended.”

Eddie Masina

Eddie is now a Champion4Change, advocating to end RHD by sharing his personal experiences and delivering education and awareness programs for his community.

Michael's story

Watch the story of a 14-year-old Aboriginal boy named Michael and his Aunty Mary. Learn what to do if your child or family member has acute rheumatic fever.   

About the Champions4Change program

The Champions4Change program is a national program that brings together First Nations people with lived experience of ARF and RHD.

This program is built on respect and the strength of community voices, embedding lived experience and culture at the centre of care. Champions4Change (C4C) is designed and led by First Nations people across Australia who have lived experience of ARF and RHD.

The program amplifies the voices of Champions and encourages them to use their cultural knowledge to bring about a richer understanding of what it truly means to live with ARF and RHD. Champions4Change is a safe space for people living with ARF and RHD to share, connect, learn together and inspire others.

Champions have opportunities to learn more about ARF and RHD, build confidence to speak up for themselves, their families and communities, co-design resources and speak at events by using their lived experience to help raise awareness and lead change.

Champions4Change

The Champions4Change program is a national program that brings together First Nations people with lived experience of ARF and RHD, and supports them to be Champions in their community.

Champions4Change aims to raise awareness, provide health promotion and health prevention messages, to support communities at risk of ARF and RHD, advocate for health systems change and provide support to people with ARF and RHD.

The program amplifies the voices of the First Nations peoples, and encourages them to tap into their cultural knowledge to bring about a richer understanding of what it truly means to live with ARF and RHD. Learn more about getting involved in the Champions4Change program.