Strengthening awareness of "iron overload" is the aim of Haemochromatosis Awareness Week, which kicks off today and runs 7-13 August.
Haemochromatosis Australia will follow up the week with a free public information session in Sydney 26 August 2017 at Club on East, Sutherland from 2pm. The session will feature presentations from medical and scientific experts to help people understand and mange haemochromatosis. The event is open to everyone, people diagnosed with the condition, their families and friends and anyone with a genuine interest in iron overload disorder. RSVP to 130 019 028 or [email protected].
“Most people know too little iron can be bad for your health. But 'iron?overload' can also cause serious harm,” said Di Prince, President, Haemochromatosis Australia.
“Inherited iron overload is most often caused by a genetic condition,with about 1 in 200 people of northern European origin genetically at risk of developing this disorder.”
“It can be an extremely debilitating condition, and results from incorrect dietary iron uptake, processing and storage within the body."
“People are often worried and a confused when their GP tells them that have a genetic condition like this. Having a chance to hear from experts often helps those newly diagnosed. Even people managing the condition successfully for a long time sometimes have questions they really want to ask at an information session like this.”
Known medically as haemochromatosis, it is the most common genetic disorder in Australia but public awareness of the condition is low and this contributes to the condition being under-diagnosed. Diagnosis is via blood tests which are simple and cheap.
“People with iron overload often feel tired all the time, sometimes with aching joints. Excess iron can continue to build up in the liver, the heart and other organs causing serious problems including arthritis and diabetes,” said Professor John Olynyk, Medical Advisor to Haemochromatosis Australia.
“Accumulating damage can shorten life expectancy, however, if haemochromatosis is detected before damage occurs, it can easily be managed and is no barrier to a normal life.”
Di Prince said that many people don’t know this condition exists, "and so it’s encouraging to see the condition gaining more attention.”
Haemochromatosis Awareness Week is designed to raise awareness of haemochromatosis and improve the rate of early diagnosis in order to prevent much ill-health.
For more details, contact Di Prince on 0418 494 113 or Tony Moorhead on 0435 375 450.
• Initial tests for haemochromatosis are simple blood tests called “iron studies” that can be ordered by your doctor.
• Treatment is simple, cheap and effective. This consists of regular removal of blood, known as a venesection. The procedure is the same as for blood donors.
• The Australian Blood Service provides a therapeutic venesection service for eligible patients http://resources.transfusion.com.au/cdm/ref/collection/p16691coll1/id/235
• Guidelines for preventative activities in general practice (RACGP ?2016) provides updated advice for GPs http://www.racgp.org.au/your-practice/guidelines/redbook/2-genetic-counselling-and-testing/
• From science communication group NOVA:?http://www.nova.org.au/people-medicine/iron-overload
For further information about haemochromatosis, visit Haemochromatosis Australia website www.ha.org.au or call 1300 019 028.
Support and advocacy group for people affected by haemochromatosis.