Telstra Tower and the National Carillon will be glowing red tonight until Monday 7 June to raise awareness of undiagnosed iron overload disorder, otherwise known as haemochromatosis.
From 1 June, over 30 well-known buildings and landmarks around Australia will be turning red during World Haemochromatosis Week to raise awareness of the disorder, which can affect organs and lead to premature death if left untreated.
According to Haemochromatosis Australia, haemochromatosis is one of the most common genetic disorders in Australia, with one in seven Australians carrying a mutation of the defective gene.
More than 100,000 Australians are at greater risk of developing liver cancer, arthritis, diabetes, and other chronic conditions because of undiagnosed haemochromatosis.
Canberra locals Jeff Hobson and Karin Calford both volunteer for Haemochromatosis Australia after having both been diagnosed with the disorder.
When Mr Hobson first went to the doctor 30 years ago, he was originally diagnosed with Hepatitis C due to the similarity of symptoms.
“It’s fair to say back then they didn’t know a great deal about it and it’s only in the last three or four years that I’ve noticed a significant change,” he said.
He explained the genetic disorder is often left undiagnosed due to its non-specific symptoms, which can include fatigue, joint pain and abdominal pain.
According to Haemochromatosis Australia, it’s due to the non-specific symptoms that those living with haemochromatosis aren’t diagnosed until aged in their mid-40s, suffering ill health as a result.
Ms Calford said that people often talk about iron deficiency but ignore the other end of the spectrum because there isn’t enough community knowledge about the disorder.
“It’s the general community that’s not aware of it,” she said.
“It certainly is well known in terms of the medical profession. I mean we know how to diagnose it; we know how to treat it; we know how to manage it. It’s just a matter of making sure that those things are done in an appropriate and timely way.”
If diagnosed early, the treatment for haemochromatosis is simple, safe and effective. It consists of regular removal of blood, known as venesection.
Mr Hobson said the lighting of the buildings is an important opportunity to draw attention to haemochromatosis and the risk of inherited iron overload worldwide.
“Part of the symbolisation is the lighting up of various venues and buildings with the colour red to signify the blood, the iron component and the build-up and storage of iron, which then goes on to cause issues if it’s not addressed and taken under control,” he said.
Ms Calford said the main message of World Haemochromatosis Week is not for people to fear the disorder but for the public to know that diagnosis and treatment is simple.
“It’s really well worth talking about this condition because every time we detect a person when they’re still well and healthy, it means there’s an opportunity to detect other people or family members that may also be impacted by this.
“Prevention is definitely the cure,” she said.
For more information about World Haemochromatosis Week, visit haemochromatosis.org.au/whw/
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