A Wagga family is calling for more awareness around the blood condition Haemochromatosis after it impacted their lives in more than one way.
Haemochromatosis is a genetic condition causing the body to absorb and retain too much iron and deposit it on major organs like the liver and kidneys which can have severe impacts if left untreated.
The Barclay family discovered they each had the gene is some form when daughter Jess went for a routine check-up and doctors found her blood had high levels of iron.
"The doctor noticed I had high iron levels, so that’s when she looked into it further and noticed I had part of the haemochromatosis gene, which means I do have it, but not to the full extent," she said.
"The genes for it have to come from your parents, it’s not something you can just pick up, so that’s when Mum and Dad got tested."
Jess' mother Anne was found to be a carrier of the gene, and her father James was given a far more serious diagnosis.
"I had the full gene, and my first iron count was 5000, which has now dropped to around 600 after two years of intense treatment," James said.
"I didn’t have a clue anything was wrong with me, you know I might have had some sore joints or fatigue but nothing seriously concerning, and apparently one of the other key symptoms is having easily tanned skin."
James' diagnosis was so severe that after further tests to major organs and muscles, doctors discovered he had liver cancer.
"The iron deposits from the condition caused cirrhosis of my liver, which lead to cancer," he said.
"I had two operations with chemo treatment, and now I’m on a drug that was experimental before it went on the PBS, and this drug only works in 30 per cent of cases which I’m very lucky to be in that 30 per cent."
The Wagga father said he had to give 500mL of weekly to begin with, but that slowly dropped to fortnightly, and then now to every three weeks.
"The hospital staff all say I’m part of the family because I’m there so much," he said.
Haemochromatosis Australia, the not-for-profit organisation supporting the sufferers of the condition and the research behind it, have received funding which will go towards an awareness campaign.
Anne Barclay said she and James had been members of the organisation since his diagnosis, and that the campaign was a step in the right direction.
One in seven people are carriers of the gene, and one in 200 actually go on to have serious issues from it.Anne Barclay
"This campaign will target the general public, blood banks and also medical professionals who may not know enough about the condition."
James said it was all about early diagnosis.
"If I hadn’t have found out about my Haemochromatosis when I did, my liver would have failed and I wouldn’t be here because I wouldn’t have known I needed treatment," he said.
"Not to mention, I’m costing the government $400 a day just for my medication - imagine the money they’d save if I got checked sooner and didn’t need it.
"With more awareness, people can get on top of the condition before it advances to issues like mine which will not only mean more blood donations for blood banks, but reduce pressure on hospitals to admit patients with severe secondary illnesses, so it’s a win-win."