Health & Wellbeing

World Haemochromatosis Week

More than one hundred thousand Australians are at greater risk of developing liver cancer, arthritis, diabetes and other chronic conditions because of undiagnosed haemochromatosis, a disorder where the body absorbs too much iron.

One in seven Australians carry a mutation of the defective gene and one in 200 Australians have an increased chance of developing the disorder but few know about haemochromatosis let alone have had a test for the hereditary condition. The condition is also known as ‘Iron overload’ has been historically underdiagnosed because its non-specific symptoms – including fatigue, depression and joint pain are often confused with a range of other illnesses. Unfortunately, most of those affected aren’t diagnosed until aged in their mid-forties and suffering ill-health as a result.

If diagnosed early the treatment for haemochromatosis is simple, safe and effective. It consists of regular removal of blood, known as venesection. Murdoch Children’s Research Institute and Medical Director of Victorian Clinical Genetics Service, Professor Martin Delatycki, said “Recent findings from UK research led by the University of Exeter identified higher risks of liver disease, arthritis and other chronic conditions in people with haemochromatosis, supporting the case for a national screening program here in Australia.”

The Exeter study projected that more than seven per cent of men with two copies of the faulty haemochromatosis gene develop liver cancer by age 75, compared to just 0.6 per cent in the general population. Previously, the Exeter team found that having the haemochromatosis double faulty gene quadruples the risk of liver disease and doubles the risk of arthritis and frailty in older age groups. It also causes a higher risk of diabetes and chronic pain. Professor Delatycki’s own research here in Australia showed that even in cases when iron stores were only mildly elevated patients benefitted from venesections and were unlikely to develop chronic conditions associated with iron overload.

Haemochromatosis Australia president, Dr Dianne Prince said, “Hereditary haemochromatosis is estimated to cost Australia’s health system over $280 million annually and add further cost burdens by compounding other chronic conditions when left undiagnosed and untreated.  When the body absorbs too much iron from food the excess iron overloads body tissues, damages organs and can cause premature death.  It can be easily managed, but sadly we continue to hear from people with significant health problems caused by a late diagnosis.

It’s quite common for people with these symptoms to think they’re actually iron deficient and take supplements, not knowing it’s the last thing they need. We urge people to get their iron levels checked before taking iron supplements or iron-fortified foods.”

One man who would have benefited from early treatment is James Barclay from Wagga Wagga, New South Wales.  At 54, James was diagnosed with liver cirrhosis and liver cancer as a consequence of undiagnosed haemochromatosis. Ironically, he’d regularly had blood tests because of his exposure to lead but never had his iron levels tested. “I put my symptoms down to ageing and my line of work and only got tested for haemochromatosis after my daughter was found to have high iron levels and was subsequently diagnosed.” Of Mr Barclay’s six siblings one brother also has discovered he has the condition and another brother has been identified as a carrier of the faulty gene and his daughter has tested positive for iron overload.

World Haemochromatosis Week begins 1 June 2021. Over 30 well-known buildings and landmarks around Australia will be illuminated in red to raise awareness about the condition and prompt people to get tested.

For more information about World Haemochromatosis Week, visit Haemochromatosis Australia or call 1300 019 028.