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Some Aussies are pumping more iron than they need
Monday, 06 August 2012 15:51
Haemochromatosis is a scary long word. It means inherited iron overload disorder.
About 1 in every 200 Australians have the genes and may experience chronic fatigue and aching joints. If they load up more iron they may develop liver problems, diabetes, arthritis, heart problems and loss of sexual functions.
Although haemochromatosis is very common and can be found by simple blood tests, it is often overlooked. Fortunately it is easily treated if diagnosed early.
David Blackmore is famous for pioneering the production of Wagu beef in Australia, serving premium markets all over the world. But for years David didnâ€™t know that he was building up too much iron in his body until he was in real trouble. Now he has a regime of giving blood regularly to unload iron.
Giving blood to the Australian Red Cross Blood Service has probably saved Davidâ€™s life. It has also saved other peopleâ€™s lives.
August 13th to 19th is Haemochromatosis Awareness Week. People who have been feeling unusually tired and flat with aching joints over a long time are encouraged to discuss their symptoms with their GP and to ask about haemochromatosis.
People who know that there is haemochromatosis in their family should also ask to be tested.
â€œHaemochromatosis is difficult to say but easy to find and simple to treatâ€ says Ben Marris, President of Haemochromatosis Australia, the non-profit advocacy and support group. â€œIf you think you may have this condition you should be tested now and iron out your future health problems.â€
For more information visit www.haemochromatosis.org.au or call the Haemochromatosis Information Line 1300 019 028
For more information call
Ben Marris, President Haemochromatosis Australia, (03)62674787 mob 0428 674787
HAEMOCHROMATOSIS AWARENESS WEEK 13th 19th AUGUST
PUBLIC INFORMATION EVENTS
Sydney Information Session and AGM
We will launch Haemochromatosis Awareness Week at a free public haemochromatosis information session on Saturday 11 August 2012 1.00pm at the Parramatta Town Hall. The session will be followed by the Annual General Meeting of Haemochromatosis Australia.
Port Macquarie Information Session
In the lead-up to Haemochromatosis Awareness Week there will be a free public haemochromatosis information session on Saturday 4 August 2012 at 1pm at the Port Macquarie Panthers Club.
Brisbane Haemochromatosis Seminar
In the lead-up to Haemochromatosis Awareness Week there will be a free haemochromatosis seminar on Wednesday 8 August 2012 from 5.30pm to 7.30pm at QIMR, Herston. The seminar will be chaired by Professor Lawrie Powell, world authority on haemochromatosis. Speakers include scientists and health professionals from QIMR, The University of Queensland, The Australian Red Cross Blood Service and the Haemochromatosis Australia.
Hobart Art Exhibition
A group art exhibition for Haemochromatosis Awareness Week to be held in the Stable Gallery, Cooley's Hotel, Moonah from 10 August until 4 September. All welcome! Grand opening Friday 10 August at 6pm.
Adelaide Information Session
During Haemochromatosis Awareness Week there will be a free public haemochromatosis information session on Tuesday 14 August 2012 at 7pm at Burnside Community Hall, Tusmore.
Perth Information Session
During Haemochromatosis Awareness Week there will be a free public haemochromatosis information session on Thursday 16 August 2012 6.30pm at Fremantle Hospital.
Sunshine Coast, Queensland Information Session
During Haemochromatosis Awareness Week there will be a free public haemochromatosis information session on Sunday 19 August 2012 at 2pm at the Sunshine Beach Surf Club.
Melbourne Information Session
As part of Haemochromatosis Awareness Week events, there will be a free public haemochromatosis information session on Saturday 25 August 2012 at 1pm at the North Melbourne Community Centre.
Gold Coast Information Session
As part of Haemochromatosis Awareness Week events, there will be a free public haemochromatosis information session on Saturday 25 August 2012 at 10 am at the Elanora Public Library.
ABOUT HAEMOCHROMATOSIS AUSTRALIA
Haemochromatosis Australia is the support, health promotion and advocacy group for people with haemochromatosis and their families. The group has operated continuously for 22 years.
â€¢ It is a not for profit group run entirely by volunteers.
â€¢ It has over 1400 members across Australia.
â€¢ It operates an Information line 1300 019 028 and informative website.
â€¢ It publishes two informative booklets and a quarterly newsletter.
â€¢ It organises local support group and information sessions.
The groups medical advisors include some of the leading academics and clinicians in the field of haemochromatosis, including -
Prof Emeritus Lawrie Powell, Prof John Olynyk, Prof Martin Delatycki, Prof Darrell Crawford, Prof Katie Allen
For more information www.haemochromatosis.org,au
Haemochromatosis, or inherited iron overload disorder, is the most common genetic disorder in Australia. It causes the body to absorb excess iron which builds up in the organs and joints over many years and eventually becomes toxic.
Early symptoms include joint pains, fatigue, weakness and sexual dysfunction.
If untreated it can lead to serious and potentially fatal symptoms including diabetes, liver cancer and cirrhosis, heart failure and osteoarthritis.
Despite being so common (one in 200 have the genetic pre-disposition) it is not well known and is frequently overlooked. Often only the individual symptoms are treated and the underlying cause is not recognised.
Tests for the condition are simple and cheap. If iron studies show raised ferritin on two occasions, or if a first degree relative is diagnosed, then then a genetic test is covered by Medicare.
If people are diagnosed early and treated then haemochromatosis is no barrier to a normal healthy life.
Treatment is simple, drug free and uncontroversial. Regular venesection, like giving blood at a blood bank, unloads iron. Often this can be done at the Red Cross Blood Service and the blood is useful.
Perhaps, if the condition needed pharmaceutical treatment, it would be better known
The inaugural Australian Haemochromatosis Week will be held from 13th to 19th August 2012. The purpose of the week is to raise community awareness of the condition and thus improve the rate of early diagnosis.
For expertise on haemochromatosis
Professor Lawrie Powell AC
Director, Royal Brisbane Womenâ€™s Hospital Centre for the Advancement of Clinical Research
Professor Emeritus, University of Queensland (07) 3646 2352
Professor Darrell Crawford.
Head, Discipline of Medicine. University of Queensland
Dr Katie Goot
Thangool, Queensland 0438 797 659
GP Liaison Officer, Haemochromatosis Australia (07) 4995 8612
Professor Martin Delatycki
Director, Bruce Lefroy Centre - Murdoch Childrens Research Institute
Director, Clinical Genetics - Austin Health (03) 9496 4355
Professor Katie Allen
Group Leader, Gut and Liver Research Group, 0401 002640
Murdoch Childrens Research Institute, Melbourne
Professor John Olynyk
Director of Gastroenterology, Fremantle Hospital (07) 3646 2352
Laureate Professor John Aitken
Newcastle University available for interview by appointment with
(02) 49 212 082
For personal stories of haemochromatosis
Andrew Chapman, Photographer (03) 9752 1492 0418 557 590
David Blackmore, Wagu beef 0408 507 308
Dr. Daniel Johnstone, Sydney University 0422 074 503