While one in 200 people with northern European heritage have it, many can’t even pronounce Judi McDonald’s condition.

In the early 2000s, Ms McDonald was diagnosed with haemochromatosis, an inherited disorder that impacts how the body absorbs iron.

She found out about the disorder by chance, discovering an account of it upon reading a large book detailing her ancestry.

“No-one in the family knew about it, knew how to say it, knew how to spell it — it was such an unknown thing,” Ms McDonald said.

Despite the high rates of haemochromatosis, many do not even know it exists, which can result in deadly outcomes.

The condition causes people to absorb too much iron, and the excess iron stored in the body can, over time, lead to iron overload.

While it’s easily treated with regular venesection — a process like blood donation that removes excess iron from the body — if the disorder is left unchecked it can result in tissue and organ damage, and, potentially, premature death.

Ms McDonald said a lack of awareness about the condition and the attribution of symptoms to other, less serious causes could be life-threatening.

“I always had the feeling of being tired, I had achy joints. There were always excuses — it’s cold outside, I’m getting old,” she said.

“You will find so many people who have had liver or heart transplants have haemochromatosis, but if they would’ve found out earlier, they would’ve just had to (get treatment).”

Symptoms of iron overload include chronic fatigue and joint pain, which can lead to osteoarthritis.

As it advances, it can also cause hormonal changes, heart problems, diabetes, discolouring of the skin to bronze or slate grey, and liver cirrhosis — a late-stage result of chronic liver damage, which can cause liver cancer.

Ms McDonald, who gets treatment every four months, said she began to experience symptoms in the lead-up to her next venesection and when she ate iron-rich foods in excess.

“I can feel my elbows start to ache, and I can also feel myself just not coping, like life’s really tough all of a sudden,” she said.

“You can get very moody — it’s that horrible feeling that it’s just getting too much.”

The haemochromatosis gene is inherited, but it can only be caused if both parents are carriers.

Both Ms McDonald’s father and aunt had symptoms and have since passed away.

Her own diagnosis prompted her family members to get tested, uncovering other diagnoses and carrier genes.

Shortly after her diagnosis, Ms McDonald became a local volunteer advocate for Haemochromatosis Australia, an organisation dedicated to spreading awareness about the condition and even lobbying for change at parliament.

She has since been the head of many Benalla-based events, spreading awareness annually on Haemochromatosis Week — a worldwide campaign held in the first week of June.

This year, the event will be held in conjunction with a monthly arthritis group meeting, which Ms McDonald is also a part of, at RubyBlue Cafe on Nunn St, Benalla.

On Tuesday, June 2, the event will start in the cafe’s meeting room at 10am, followed by an 11am talk and Q&A session with Ms McDonald covering all things haemochromatosis.

She will also remain in the cafe until 2pm for anyone interested in learning about the disorder, and there will be ways to donate to Haemochromatosis Australia by purchasing crocheted flowers or handmade gift cards.

Ms McDonald said it was important to speak about the condition.

“If someone hadn’t put that message into that book about my ancestry, I don’t know where I would be now,” she said.

“Everyone who talks to me about having haemochromatosis just makes me realise how important it is to keep talking and keep people informed.”

Twenty years on from diagnosis, Ms McDonald thanks the community for its support in spreading awareness about the condition and raising funds for Haemochromatosis Australia.

For more information about haemochromatosis, visit haemochromatosis.org.au

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