Published: 05 June 2020

Legislative Council Thursday 4 June, 2020

Ms FORREST (Murchison) - Mr President, I rise to raise the important health matter and to raise awareness of a condition that has been a silent killer, one which can be easily managed or serious complications avoided if people are aware they have the condition.

This condition is haemochromatosis.  Why now?  This week is World Haemochromatosis Week and it is timely to inform members and the public that haemochromatosis is the most common genetic disorder in Australia.  About one in 200 people of northern European origin have the genetic risk for hemochromatosis.

 People with haemochromatosis absorb too much iron from their diet.  The excess iron is stored in the body and over time, this iron leads to iron overload.  This excess iron overloads body tissues and damages organs in the body, leading to premature death.  There is no harm at all in finding out if you should be tested and the treatment is easy.  A regular donation of blood, which then helps someone else who may need a blood transfusion, so two people get direct benefit.

We all know that not enough iron causes health problems, but few realise that for some, too much iron is also a problem.  If undetected and untreated, the excess iron can cause organ damage and tissue damage, and result in premature death.

Haemochromatosis tends to go undiagnosed, partly because its symptoms are similar to a range of other illnesses.  Both sexes are at risk of haemochromatosis; however, women tend to develop the condition later in life because of the blood loss associated with menstruation during the child­bearing years and childbirth, although some women will develop symptoms at an early age.

Men are at risk throughout their lives, but postmenopausal women are equally at risk of the complications associated with the disease.  The good news is that if haemochromatosis is detected before damage occurs, it is easily treated and is no barrier to a happy and successful life.

To provide a little information on why this disease needs to be taken seriously.  I note that many in this place are more likely to have suffered from low iron levels, especially during pregnancy - for some that is not the case - but some store excess iron rather than have a deficiency and this can be very harmful.

We normally get iron from our daily diet.  The body is finely tuned to take in and absorb only as much iron as is needed.  Red blood cells contain the protein haemoglobin which carries oxygen around the body.  Iron is needed for the production of haemoglobin; however, the human body has no method of excreting excess iron.  It controls iron levels by absorbing only the right amount of iron from our food.  Any excess is then stored in our organs and joints.

The body typically stores around one gram or less of iron; however, a person with haemochromatosis absorbs a great deal more from their food than is necessary.  Iron stores of five grams or more can build up inside the body, and organs such as the liver, heart and pancreas are affected and ultimately damaged.  Without treatment, haemochromatosis can lead to death.

For people with haemochromatosis, the excess iron stored in these organs and joints gradually increases over many years.  The liver can become enlarged and damaged leading to serious disease such as sclerosis or liver cancer.  It can also cause other health problems, including heart disease, diabetes, endocrine and sexual dysfunction, and arthritis.

Many cases of haemochromatosis are now diagnosed when a person attends a general practitioner for a check‑up.

I note a personal interest in this health condition as my husband Rob has haemochromatosis.  His condition was picked up in a work-related insurance check in 1998.  Had he not been diagnosed at this time, he might well not be still alive.  His cousin, who was living in America at the time, was similarly diagnosed following an employer requiring a health insurance medical.

People should be tested for haemochromatosis if they experience general symptoms related to issues of increased levels of stored iron in the whole body.  These symptoms include fatigue, weakness, lethargy, apathy, weight loss, abdominal pain and joint aches - in particular, aches within joints in the fingers.  We probably all feel like we have it now.  If you have these symptoms, are Caucasian, over the age of 30 - that is probably all of us - haemochromatosis should be suspected.  People should be tested if they have any of the complications that can be caused by haemochromatosis, including liver disease, liver cancer, heart failure, diabetes, impotence, loss of libido, early menopause, pigmented skin, or arthritis, or if you have family members - brother, sister, child, parent or grandparent - who have haemochromatosis.  You may not know they do, though.

Those with a cousin, aunt or uncle who has haemochromatosis should also be tested, although the risk is not as great as above.

If any of you fit those categories, a simple blood test will pick it up.

This week is World Haemochromatosis Week. and I encourage members to raise awareness in their communities to this serious disease.  If you are at all concerned, get tested. 


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