EXCLUSIVE

Doctors say thousands of Australians are dying from a disorder that’s easily detected and treated, but not many people know it exists.

Familial Hypercholesterolaemia (FH) is an inherited condition that causes dangerously high “bad” cholesterol levels.

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It affects an estimated one in 250 people and if left untreated can lead to clogged arteries, early coronary heart disease, and even heart attacks.

Often there are no symptoms, and doctors warn fit and health young Australians are at risk of an early death if it’s not detected.

Associate Professor Shubha Srinivasan spoke exclusively with 7NEWS, and said it was important families get tested at an early age.

“FH is inherited in a dominant manner, which means if you’ve got the gene, you’ve got a 50-50 chance of passing it on to your children,” Dr Shuba said.

“If we pick up a child or a young person with the FH gene, that means one of their parents has it, it means their siblings might have it, it means their aunties and uncles and cousins might have it.”

Twenty-two years ago, Dianne Vest’s husband Rodney suffered a heart attack in their backyard.

Dianne performed CPR for over an hour, as did paramedics, but he couldn’t be revived.

“He was only 34 and because of his age and being so young they tried everything — when I got to the hospital I was taken to another part of the hospital where I was told that my husband had died,” she told 7NEWS.

A week later her husband’s doctor personally called Dianne with the results of the autopsy report, and told her that Rodney’s arteries were clogged with cholesterol.

“Because of that, he said I really needed to test my children because of the severity of the damage to my husband’s heart.

“The lack of blood flow throughout his body showed that he definitely had severe atherosclerosis and it was most likely FH [Familial Hypercholesterolaemia].”

It was a diagnosis Dianne could never have expected.

“He was fit, he was healthy, he would often do the Sydney to Wollongong bike rides for fundraisers”, she said.

“It doesn’t matter how old you are or how young you are — this affects everybody and it kills people.”

Dianne subsequently had her children tested.

Results returned a positive reading, and now her grandchildren have the illness.

She said her beloved Rodney made the ultimate sacrifice, that saved her children’s life.

“There’s a part of me that’s grateful that he’s died because had he not died I would never ever have found out about my children and I would have lost him as well as my kids,” she told 7NEWS.

Early diagnosis and treatment can dramatically improve life expectancy and thanks to advances in genomic technology, testing is now more accessible than ever.

A simple blood or saliva test at the GP is all it takes to find out.

It’s completely government funded, so is free through Medicare.

Makers of the test, Illumina, said a conversation with your doctor could make all the difference.

“There are close to 160,000 Australians who currently have FH and have no idea that they have it,” Katie Ellis, Illumina’s Senior Manager of Medical Affairs told 7NEWS.

“There’s not many conditions in the world that are completely treatable and preventable — this is one,” she said.

But she warned, there’s often no symptoms, “it’s completely silent.”

“People are really fit and healthy — it’s not just due to bad habits or bad lifestyle that they have high cholesterol — their body’s built differently, it’s nobody’s fault,” she said.

“But this means there’s a chance to step in and have a really happy, full life.”