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Joel's Story

As 18-year-old Joel Seeto discovered, heart disease can affect anyone – male, female, old or young.

Four years ago, Joel Seeto felt like any other fit, healthy teenage boy. When he wasn’t at school he was playing football, surfing or socialising.

He never would have thought that at just 18 years old he’d find himself on the waiting list for a heart transplant.

Joel was just 14 when he was diagnosed with hypertrophic cardiomyopathy (HCM) – a genetic heart condition that causes thickening of the heart walls, making it increasingly difficult for the heart to pump blood.

Over the past year Joel’s condition has deteriorated and it was just in the past month that he was officially added to the heart transplant list. “Back when I first got diagnosed I could go a day without thinking about it,” says Joel. “But ever since I was told to speak to the transplant team it’s definitely something I think about every day…At that point I freaked out a bit.”

HCM affects around one in every 500 people and is the leading cause of sudden cardiac death in children and young people. Most of us have heard stories of a sports star or athlete suddenly dying of heart failure, seemingly out of nowhere. In most instances this is caused by HCM. Unfortunately, HCM does not always have obvious symptoms so it can go undetected for years. For some people, the first symptom will be death.

Once a keen football player, Joel recognises how lucky he was to discover he is living with HCM when he did. “Lots of people have the same condition as me but they don’t have any symptoms at all – even professional athletes,” says Joel. “I’m pretty lucky that nothing ever happened to me while I was playing.”

While HCM is usually an inherited disease, there was no history of HCM in any other members of Joel’s family, which further emphasises that heart disease does not discriminate. It can affect anyone, regardless of age, gender, physical fitness, or even family history.

Joel hopes that by speaking out and telling his story, he can encourage people to get tested and help prevent deaths caused by undetected heart conditions. He is passionate about raising awareness because, as Joel explains, “heart disease is the number one killer, but lots of the time it can be prevented.”

While Joel admits that the past few years have been tough – giving up playing sport and coming to terms with his condition – he looks towards his future, and the reality of needing a heart transplant, with positivity and pragmatism. “I’ve thought about it and in the long run it’s actually a good thing, because after I recover I can go back to surfing and playing touch footy and stuff…I just want to get on with it and live a normal life.”

Heart problems can affect anyone – your friends, your family – you never know.

You can help patients like Joel by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Learn more about cardiomyopathy 

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