Chris Hayes (Fowler, Australian Labor Party) Share this | Hansard source

I, too, would like to thank the member for Shortland as she brings worthwhile matters to the attention of the House on so many occasions. On this occasion, she reminds us that last week was Haemochromatosis Awareness Week. During the week Haemochromatosis Australia, a voluntary advocacy and support group, has been raising awareness of this distressing medical condition.

Haemochromatosis is an inherent iron overload disorder. I was surprised how little people knew about it, including me, until recently. Haemochromatosis Australia notes that, in order for a genetic condition to be passed on, both parents must be carriers of the abnormal gene. More than 100,000 Australians, or one in 200 of European ancestry, have the genetic predisposition for this disorder. The number could be a lot higher considering the reports of high levels of haemochromatosis sufferers that go undiagnosed. In fact, it was only 10 years ago that I discovered that I am also a carrier of that defective gene. It is something I share with my mother, apart from my personality.

It came by chance and is something that I suppose many people in my situation would not have been tested for. Other than my mother being diagnosed, I probably would not have had the test in the first place to discover if it had been passed on to her sons. Hopefully, I am not showing any great effect of it at this stage, but if I start limping I will know the reason for it.

The high occurrence of this disorder certainly warrants greater effort and awareness of the symptoms. In my case, it was discovered by accident because my mother was being tested for something else. Awareness needs to be raised, as many people who are believed to be suffering from these symptoms are unaware of what relationship they have with haemochromatosis as a disorder. The symptoms include chronic fatigue, lethargy, skin pigmentation and joint pain which could be considered to be arthritic or lead to arthritis. In some cases extreme symptoms include liver cancer, diabetes and weakening of the heart muscles which can lead to heart failure. These are serious symptoms which can be very distressing if the person does not know the cause and about the possible treatments that are available.

The onset of the symptoms can be gradual, resulting in the condition not being diagnosed until middle age. The condition can be hard to diagnose, because the symptoms may be confused with those of other diseases. Iron overload disorder is more common in men than in women, due to the nature of the menstrual cycle. The disorder can be detected by a sternum test or possibly through a liver biopsy, as the iron accumulation is particularly damaging to that organ. Treatment involves regular blood removal to remove the excess iron. This is quite simple—it just means giving more blood. I have been giving blood for many, many years. It made no difference to the blood, and it was not even detected when I was giving blood that I was a carrier of this defective gene. People that have this disorder simply need to give blood regularly. This brings me to the fact that one in three Australians will need blood some time in their lifetime. But regrettably only one in 30 Australians actually donates blood. Giving blood, whilst it might take an hour out of your day, makes a lot of sense and one donation of blood can save up to three lives. I think that is a pretty important as well.

Part of the answer to haemochromatosis is early diagnosis and understanding that the treatment is not severe, which would put a lot of people's minds at rest, providing they know and know early the symptoms and also that there is a simple cure. (Time expired)

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