MEDIA Release - World Haemochromatosis Week 4-10 June 2018
Iron researcher goes rusty
Life can be a surprising business – just ask university academic Dan Johnstone. Eleven years ago at the age of 26 Dan was enjoying life to the full. Part of his professional focus at the University of Newcastle, NSW, was investigating the effects of haemochromatosis on the brain and heart.
Haemochromatosis or iron overload, is a serious condition that results from the incorrect uptake, processing and storage of dietary iron within the body. Left undetected and untreated the excess iron can cause liver cirrhosis, liver cancer, arthritis, diabetes and potential death.
After four years of study to complete his PhD, Dan had gained a valuable insight into the extent and effects of haemochromatosis. “However, I was feeling lethargic, which at first, I blamed on overwork, as I had been working excessively long hours. But when my GP ordered a range of blood tests for an unrelated medical complaint, I discovered with a mixture of surprise and shock that I was suffering from haemochromatosis.”
Dr Dianne Prince, president of Haemochromatosis Australia, says “This is the most common genetic disorder in Australia. 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.
“Lethargy, along with fatigue, weakness and joint pains, is one of the key symptoms of haemochromatosis and linked to high levels of iron stored in the body. One indicator of the level of stored iron is serum ferritin. The normal range in men is 20-300 micrograms per litre of blood. Dan’s level was closer to 950,” says Dr Prince.
“Most health professionals agree that early diagnosis is the answer to combating the potential long-term effects of the body storing too much iron, particularly as there is no natural way of excreting the excess iron. 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,” says Dr Prince.
Dan says, “My choice of PhD research topic had nothing to do with any previous notion that myself or my family may have been afflicted by the condition. I think my situation really highlights how under-recognised this condition is. If someone working specifically on haemochromatosis can go through life totally unaware that they are affected by the condition, what chance of detecting it early have people who have never heard of haemochromatosis.”
“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,” says Dr Prince.
Although haemochromatosis is detected by simple blood tests, Haemochromatosis Australia continues 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.
The tragedy is that so many people suffer harm unnecessarily when timely management of their condition is simple, safe and effective.
Dan says “I think I was lucky in finding out about my condition and starting treatment relatively early in life before any serious damage had been done. I’m glad to have had it picked up so early. Early detection underlines the importance of public awareness campaigns.”
World Haemochromatosis Week, which kicks off today, 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.
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.
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.
For further information, or to organise an interview please contact:
Dr Di Prince, Tel: 0418 494 113 email: [email protected]
Mr Tony Moorhead, Tel: 0435 375 450 email: tony.moorhea[email protected]
Dr Dan Johnstone, Tel: 0422 074 503 email: [email protected]
For further information about haemochromatosis, visit Haemochromatosis Australia website www.ha.org.au or call 1300 019 028.
- 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.
Support and advocacy group for people affected by haemochromatosis.
University of Sydney
Lecturer and researcher.
M: 0422 074 503