Monday, June 4th, 2018 - Haemochromatosis Australia

Iron overload or haemochromatosis, is a serious condition that results from the incorrect uptake, processing and storage of dietary iron within the body. It can cause liver cirrhosis, liver cancer, arthritis and diabetes.

World Haemochromatosis Week, which kicks off 4 June, aims to strengthen awareness of iron overload as early diagnosis will result in better health outcomes for individuals as well as huge savings for a country’s health care system. 1

Haemochromatosis groups worldwide, including Haemochromatosis Australia, have joined in a push to raise awareness and improve the rate of early diagnosis of this prevalent but all too often overlooked condition.

Through international collaboration, a task force of haemochromatosis experts has agreed upon an objective, simple and practical set of therapeutic recommendations for managing hereditary haemochromatosis, which are applicable around the globe. 2

Dr Dianne Prince, President of Haemochromatosis Australia welcomes this landmark guideline, noting that although Haemochromatosis is Australia’s most common genetic disorder it is still widely under-diagnosed.  “About one in 200 people of European origin have the genetic predisposition for haemochromatosis and additionally, one in 7 people are carriers of the gene that causes it”

“Haemochromatosis is under-diagnosed, partly because public awareness of the condition is low but also because its symptoms, including fatigue, depression and joint pain, are confused with a range of other illnesses.

“When undetected and untreated, iron overload can result in premature death,” said Dr Prince.

Although haemochromatosis is detected by simple blood tests, support groups around the world continue to hear familiar stories from people with significant health problems caused by a late diagnosis. Recent research by the Murdoch Children’s Research Institute (MCRI) has shown that haemochromatosis should be treated even when iron stores are only mildly elevated.‘ 3

The tragedy is that so many people suffer harm unnecessarily when timely management of their condition is simple, safe and effective. Haemochromatosis can easily be managed through blood donations which remove iron from the body and a diagnosis of haemochromatosis should be no barrier to a normal life.

Joining together world-wide is a giant step towards raising awareness of the condition so people will start conversations with their medical practitioners.

The vision for the future is that no one will suffer harm from haemochromatosis.

More information about haemochromatosis can be found on Haemochromatosis Australia website www.hae,ochromatosis.org.au .

References

[1]  De Graff, B et al. (2016, November 16). Population Screening for Hereditary Haemochromatosis in Australia: Construction and Validation of a State-Transition Cost-Effectiveness Model. PharmacoEconomics.

[2)  Adams, P. et al. (2018, March 27). Therapeutic recommendations in HFE hemochromatosis for p.Cys282Tyr (C282Y/C282Y) homozygous genotype. Hepatology International.

[3] Ong, Sim Y et al.  Reduction of body iron in HFE-related haemochromatosis and moderate iron overload (Mi-Iron): a multicentre, participant blinded, randomised controlled trial The Lancet Haematology, Volume 4 , Issue 12 , e607 - e614 https://goo.gl/6ijumL

IMAGE

A high resolution press quality image of a haemochromatosis patient receiving treatment by giving blood to remove excess iron (venesection) can be downloaded from https://haemochromatosis.org.au/wordpress/wp-content/uploads/2018/05/Haemochromatosis-treatment-Venesection-Desma-Wieringa.jpg ) to accompany the story if required. No acknowledgement or caption is necessary. The patient receiving treatment (venesection) is Ms Desma Wieringa and she is available for interview.

FAST FACTS

  • Untreated haemochromatosis can cause liver cirrhosis, liver cancer, arthritis and diabetes.
  • Most common genetic disorder in Australia.
  • Initial tests for haemochromatosis are simple blood tests called “iron studies” that can be ordered by your doctor. 
  • Treatment is simple, safe and effective. This consists of regular removal of blood, known as a venesection. The procedure is the same as for blood donors.

ABOUT HAEMOCHROMATOSIS AUSTRALIA

Haemochromatosis Australia is a not-for-profit support and advocacy group for people affected by hereditary haemochromatosis.

Mission:  To provide support and promote awareness, early detection and research.

Vision:  No Australian will suffer harm from haemochromatosis.

We believe that people with haemochromatosis are entitled to:

  • The same quality of life and life expectancy as other Australians
  • Diagnosis before symptoms occur
  • Well informed health and medical services
  • Easy access to the knowledge, support and services they need.

Website: www.haemochromatosis.org.au

-ENDS-

Contact Profile

Haemochromatosis Australia


Support and advocacy group for people affected by haemochromatosis.


Dianne Prince
M: 0418494113
W: www.ha.org.au

Haemochromatosis Australia


Tony Moorhead
M: 0435375450
W: www.ha.org.au

Keywords

Haemochromatosis, iron, pumping too much iron, world haemochromatosis week, Haemochromatosis Australia

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