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What is cardiomyopathy?

Cardiomyopathy is a disease of the heart muscle that affects its ability to pump blood effectively. It can be passed on (inherited) from a parent through a faulty gene, known as a mutation. Globally, 1 in 250 people will develop a type of cardiomyopathy during their lifetime.

In Australia alone, seven¹ young people aged 1 to 35 die every week from an undiagnosed heart condition.

1 This statistic is based on research conducted by A/Prof Elizabeth Paratz (BMedSc MBBS(Hons) PhD FRACP FCSANZ FESC), Cardiologist at St Vincent’s Hospital Melbourne and leading researcher in sudden cardiac arrest in young people.

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Source study: https://academic.oup.com/europace/article/24/12/1933/6678592

What makes cardiomyopathy particularly dangerous is that many people experience no symptoms of it, and therefore it can go undiagnosed for years. In tragic circumstances like Alexandra's, it may go undiagnosed until it's too late.

 

When there are symptoms of cardiomyopathy present, they can resemble common, everyday issues. While symptoms can develop gradually, without early detection and treatment, the heart can deteriorate quickly.

 

Raising awareness is vital, especially among young people, parents, schools, and GPs. By sharing Alexandra’s story, Alexandra’s Mission aims to encourage early heart checks, support crucial research, and ultimately save lives.

Symptoms of cardiomyopathy

While symptoms of cardiomyopathy may not be present, or be subtle, there are some to be aware of.

Symptoms can be subtle and include:​

Breathlessness

Dizziness, light-headedness or fainting

Fatigue

Irregular or rapid heartbeat

Chest pain

Swollen ankles, legs and feet

Bloating or inflammation in the abdomen from fluid build up

If you have concerns about your heart health, speak to your GP about getting your heart checked. 

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Alexandra’s Mission was established in memory of Alexandra Thoms, with a mission to help prevent sudden cardiac death in young Australians. Through awareness, education, research and greater access to cardiac screening, we’re working to create a future where more young lives can be protected.

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Alexandra’s Mission is a registered Australian charity with DGR 1 status, meaning donations are tax deductible.

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