A little known genetic blood condition often goes undiagnosed because its symptoms can be easily dismissed as sufferers feeling tired and lethargic.
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But the high levels of iron in the blood associated with haemochromatosis that cause the tiredness can also build up in other organs of the body and causing irrepairable damage.
That was the case for the Rousch family until matriarch Maxine Rousch was diagnosed with haemochromatosis almost 20 years ago, aged 63.
"Mum had been going to the doctor most of her life saying she was always feeling tired, and on this occasion the doctor did some extra tests and found out she had haemochromatosis," said Sue Prendergast.
Because of the hereditary nature of the condition, her doctor urged her to let immediate and extended family members know and for them to be tested.
It turned out Mrs Rousch's four children Nick, Sue, Denis and Donna also have the condition and for Nick particularly it made sense.
"Nick had been going to the doctor in that year saying he was really tired, that he'd sit down and fall asleep and his doctor said he needed to cut back drinking and look after his liver," Ms Prendergast said.
"As soon as mum rang and said she had this hereditary disorder, Nick went to the doctor and got tested and that was his problem."
The level of ferritin, a protein that stores iron, in Nick's blood when he was diagnosed was 1030, compared to the normal range of 20 to 300.
And Denis' ferritin level was even higher, despite not having any symptoms.
As someone said to me, it's been called a rusty disease because you produce too much iron, it builds up in your organs and can really damage them if you don't know about it. But as soon as you give blood, it takes the excess iron away.
- Sue Prendergast
"It was lucky they were diagnosed in their 30s rather than later," Ms Prendergast said. "That's when the damage would have started to happen ... and we had some uncles who died young so maybe they had haemochromatosis too."
Thankfully the treatment for haemochromatosis is simple - donate blood to reduce iron levels in the body.
The hereditary condition, which is passed on from both biological parents, is simple to detect and treat but if undiagnosed or ignored can lead to serious and life-threatening illness, including liver disease and diabetes.
One in seven Australians carry one copy of the defective gene, and one in 200 Australians have two copies, which puts them at high risk of developing the condition.
Ms Prendergast said while more doctors were aware of the condition now, it was not as widely known about back in 2004 when the Rousch family were first diagnosed.
"As someone said to me, it's been called a rusty disease because you produce too much iron, it builds up in your organs and can really damage them if you don't know about it. But as soon as you give blood, it takes the excess iron away," she said.
Ms Prendergast, her mother and siblings now donate blood regularly to keep the iron levels in their blood within healthy limits.
And while the blood they donated early after diagnoses when their iron levels were high had to be discarded, now their blood can be used for donation.
This week is haemochromatosis awareness week and to mark the event, Ballarat's Town Hall clock and Lake Wendouree foundation will be lit with red light until June 7.
Dr Dan Johnstone, an iron researcher who also has the condition, said early detection was key to minimising or preventing organ damage.
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"Awareness of haemochromatosis is more important now than ever as early diagnosis will help save lives, cut health costs and reduce unnecessary suffering for so many individuals and families," Dr Johnstone said.
"Everybody is different; some people will have early symptoms of fatigue or joint aches while others won't know they have the condition until the damage is already done. Anyone who suspects they may have this condition should ask their GP for a blood test."
Haemochromatosis Australia spokesman Tony Moorhead said despite it being the most common genetic disorder in Australia, haemochromatosis was often underdiagnosed because the symptoms were non-specific.
"Unfortunately, most of those affected aren't diagnosed until aged in their mid-forties and already suffering ill health," he said.
"There are people with the condition who should have been diagnosed decades earlier. This would have reduced the suffering, medical cost and even loss of life that results from iron overload. If haemochromatosis is detected early enough it is completely preventable - those affected need never get sick, they simply need to donate blood to maintain normal iron levels and their health."
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