Monday, February 25th, 2019 - Haemochromatosis Australia

Despite being the most common genetic disorder in Australia, haemochromatosis is often underdiagnosed because people don’t know about it and symptoms are general.

That’s why Haemochromatosis Australia is running a social media campaign to raise awareness about the condition which is easy to test, simple to treat but tragic to ignore.

If you inherit the condition from parents, you absorb too much iron from food. This iron overloads body tissues, damages organs and can cause premature death.

Haemochromatosis is not a burden in your life if you get on to it early, and the treatment – giving blood – provides a benefit to others. The main symptoms are fatigue, aching joints and loss of libido. Early diagnosis is key to managing and reducing complications.

President of Haemochromatosis Australia Dr Dianne Prince urged young people to take action and ask their doctor for a blood test. Those of Irish and European descent are more at risk of carrying and inheriting haemochromatosis. One in seven people carry the condition, and it is equally likely in both sexes.

The hereditary condition is estimated to cost Australia’s health system about $280 million annually and add further cost burdens by compounding other chronic conditions when left undiagnosed and untreated.

“There are people with the condition who, in hindsight, should have been diagnosed decades earlier. This would have reduced the suffering, medical cost and even loss of life that results from iron overload,” Dr Prince said.

“This has been confirmed by recent UK research that showed undiagnosed haemochromatosis quadruples the risk of liver disease, doubles risk of arthritis and causes higher risk of diabetes and chronic pain.”

One such Australian is James Barclay from Wagga Wagga, New South Wales, who was not diagnosed until age 54 and now has liver cancer as a consequence of untreated haemochromatosis.

“James and his wife Anne have an important story to share and we thank them for being part of our

Iron out your health awareness campaign,” she said. 

To find out if you might be rusting from within and need to iron out your health, visit the Haemochromatosis Australia website ha.org.au or view the awareness campaign videos here https://www.youtube.com/user/HaemochromatosisAust or on social media channels.

The official launch of the Iron out your health campaign by Dr Dianne Prince and Dr Dan Johnstone will be Wednesday February 27 at 10.30am, The University of Sydney’s Liam Burke Seminar Room (formerly N248) in the Anderson Stuart Building.

Key points:

•           Haemochromatosis is the most common genetic disorder in Australia

•           If you are the 1 in 200 affected, it can cause serious health problems

•           Ask your doctor, find out if you are storing too much iron

Personal Stories

1.      Find out about haemochromatosis before it escalates

It is easy to fob-off tiredness and aching joints as symptoms of hard physical work rather than the consequence of a genetic condition that hoards iron in your body and erodes vital organs.

Running the family automotive business in Wagga Wagga, New South Wales, for over 30 years meant James Barclay spent long hours on his feet, standing on concrete, and often felt tired.

Yet it was after James’ daughter Jess was diagnosed with haemochromatosis that attention turned to where the genes appeared in the family tree and he was retrospectively diagnosed at age 4.

As soon as James had the excess iron removed from his body through regular 500 ml venesections (blood donations) his symptoms of joint pain and fatigue improved.

But sadly, subsequent testing revealed the excess iron accumulated in James’ body for decades had damaged his liver. He was diagnosed with cirrhosis and liver cancer and has been undergoing cancer treatment for the past two years.

James and his wife Anne are speaking out about their experience so that others can learn from it. They want you to find out if you are the one in 200 Australians with haemochromatosis so you can be treated early and avoid complications.

“If we had our time over, we would find out earlier before irreversible damage was done. That’s why we want others to find out if they have haemochromatosis by asking to be tested for it,” Anne said.

“Men need to be more proactive with our health and not just dismiss symptoms as being caused by gout or old age or hard work,” James said.

In hindsight, James should have been diagnosed decades earlier to avoid health complications, but he and Anne believe in the power of positive thinking and have destressed their life on a small farm outside Wagga while James has cancer treatment.   

Haemochromatosis Australia president Dr Dianne Prince said a social media campaign raising awareness about the inherited iron-overload condition is under way, with people like James and Anne telling their stories.

Dr Prince said that while haemochromatosis can be tricky to diagnose, it is easy to test, simple to treat but tragic to ignore.

“James and Anne have an important story to share and we thank them for being part of our Iron out your health awareness campaign,” she said.

2.      Researcher irons out own health issue, while working on it

There’s irony in the fact that Dan Johnstone was studying haemochromatosis when his own high iron levels identified him as the ‘one in 200’ impacted by this emergent condition.

A decade ago, some unrelated health concerns led Dr Johnstone to visit a GP for a battery of medical tests which found elevated iron levels and further tests revealed haemochromatosis – the most common genetic disorder in Australia.

“I was the first in my family to be diagnosed with the condition. My father, who was 50 at the time, subsequently had the genetic test and was diagnosed with haemochromatosis too, which might explain the minor health issues he was suffering at the time,” Dr Johnstone said.

The genetic test to identify haemochromatosis was only developed two decades ago and is yet to be made available for population screening.

“Now that my Dad and I know we have the condition, all we do is donate blood regularly to keep our iron levels stable,” he said. “Haemochromatosis is not a burden in your life if you get on to it early, and the treatment – giving blood – provides a benefit to others.”

Dr Johnstone did his PhD on iron effects in the brain at the University of Newcastle and now researches neuroprotection for older-age diseases including Alzheimer’s and Parkinson’s disease at The University of Sydney.

“Even though I was working on haemochromatosis, I had no idea that I had the condition until I was tested. I feel fortunate it was picked up in my late 20s because it doesn’t usually show symptoms until your 50s when damaging complications can arise.”

He urges young people to take action, ask their doctor for a blood test and if iron levels are high then a genetic test for haemochromatosis, because one in seven people carry the condition. Those of Irish and European descent are more at risk of carrying and inheriting it.

Haemochromatosis Australia President Dr Dianne Prince said fatigue is the main symptom of the condition and early diagnosis is key to managing and reducing complications.

“Recent research showed that undiagnosed haemochromatosis quadruples the risk of liver disease, doubles risk of arthritis and causes higher risk of diabetes and chronic pain,” Dr Prince said.

“The research supports the case for a national screening program to identify those at risk of developing iron overload and associated preventable chronic conditions, but in the meantime it is up to individuals to find out more themselves.”

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Contact Profile

Haemochromatosis Australia


Support and advocacy group for people affected by haemochromatosis.


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

University of Sydney


Lecturer and researcher.


Daniel Johnstone
M: 0422 074 503
W: sydney.edu.au/s/search.html?collection=Usyd&query=dan+johnstone&f.Content+type%7Cx=

Keywords

Haemochromatosis is the most common genetic condition in Australia but is underdiagnosed. It’s tricky to say, easy to test, simple to treat but tragic to ignore.

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