New website to help those living with childhood heart disease

heartkids: teenage girl makes heart shape with hands over her eye

A staggering 32,000 Australians under the age of 18 are living with childhood heart disease – eight babies a day in Australia are born with a heart problem.

Eight babies a day in Australia are born with a heart problem – which means around 32,000 young Australians under the age of 18 are living with childhood heart disease, says Jann Kingston, CEO of HeartKids Australia. And they may need a lot of help managing and monitoring their condition as they become adults, she says.

“Childhood heart disease is an umbrella term that covers all those heart defects present at birth, plus other heart disease that may be acquired in childhood as a result of other disease, like cardiomyopathy or rheumatic heart disease,” Ms Kingston told the AJP.

“We say, ‘once a heart kid, always a heart kid’ – because even if you have an intervention when you’re a child, you’ve still not got a normal heart.

“This means ongoing monitoring and care for all your life, and medicines are often a big part of this.

“It’s particularly important, and research shows that this is the case with the other chronic or lifelong diseases as well, that at that time when you transition from paediatric care to adult care, that transition is handled well. We know the outcomes for those who don’t stay in care are not as good as for those who do.”

It’s not unusual for young adults to be relatively unaware of the specifics of their condition, as “Mum handled all that,” she says.

HeartKids is about to launch a new website aimed at these young adults, and Ms Kingston says pharmacists can help by referring them to it.

“It’s about understanding their own condition, how it affects them, and what’s best for them.

“I think it’s really important, if a pharmacist is involved in their care, that they help the family, and as the kids get older, help them understand that it’s really important that they take the medicines as prescribed by their doctor.”

Families and young adults concerned at the ongoing cost of heart medicines for their children may be more likely to use expired medicines or swap unused medicines with other families, and community pharmacists are in a good position to point out the dangers of doing so.

“It’s those really practical things where the pharmacist can help,” she says. “There’s also issues of dietary effects on medicines, when and how to take them, safe storage, what to do if you become unwell and can’t take them… that general information is really useful.”

HeartKids is currently planning its awareness activities for HeartKids Awareness Month in February, which will feature Sweetheart Day on February 14, when Australians will be encouraged to host an event, dress in red or blue, or sell merchandise to raise funds and awareness for the organisation.

“Sweetheart Day is February 14, which is the international congenital heart disease day,” Ms Kingston says.

“There’ll be a range of activities advertised. Awareness is really important – there are more children diagnosed with childhood heart disease than cystic fibrosis or childhood cancer, but it’s not as well known.”

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