Iron matters in Mike Caldwell's haemochromatosis awareness call

MIKE Caldwell has a common condition he says most people never hear about until the moment they are told it could kill them.

Look closely at your family is the message from the former Ballarat councillor and Clean Up Australia champion.

Haemochromatosis is a genetic iron overload disorder. One in 200 Australians has a predisposition to develop the condition and one in seven Australians carries a mutation in the affected gene for it.

TOGETHER: Mike Caldwell with grandchildren Sophie Caldwell (age eight), Mitchell Baynes (12) and Scarlett Baynes (10) to raise awareness about a genetic condition creating dangerously high iron levels. Picture: Kate Healy

TOGETHER: Mike Caldwell with grandchildren Sophie Caldwell (age eight), Mitchell Baynes (12) and Scarlett Baynes (10) to raise awareness about a genetic condition creating dangerously high iron levels. Picture: Kate Healy

Mr Caldwell said looking back, it was likely his parents' deaths were related to iron overload. In particular, his mum died, aged 63, with heart issues and her "stained" looking lower legs, suggested poor circulation.

Left untreated, haemochromatosis can lead to liver disease, arthritis and diabetes. It is hard to diagnose because symptoms like fatigue, muscle pain and depression can be confused with other diseases.

For Mr Caldwell, now 79, the symptoms started 20 years ago with an unexplained tiredness and developing sleep apnoea. Then his wife contracted glandular fever which also sent him into a perilous state.

A liver biopsy confirmed the diagnosis - a method he said was far more intrusive than the blood tests to detect haemochromatosis now.

Mr Caldwell's iron levels rated about 600 when the healthy peak is 150.

Treatment is to remove blood, which he is unable to donate due to his liver cirrhosis. Once a week for a year, Mr Caldwell gave blood to bring his iron levels down. This is a process he need only do three to four times a year now.

When my case was diagnosed - I was one of 14 grandchildren and were were sure my grandparents had it - we found it was quite prevalent.

Mike Caldwell

"Having (the condition) been controlled for 20 years of my life I nearly missed out on, I want to put as much effort as I can in awareness for haemochromatosis," Mr Caldwell said. "I aim to make sure those people diagnosed make it widely known among their blood relatives too.

"When my case was diagnosed - I was one of 14 grandchildren and were were sure my grandparents had it - we found it was quite prevalent."

The 20 years since his diagnosis has offered Mr Caldwell precious time with his seven grandchildren.

Mr Caldwell has deep gratitude for the health profession that saved him and allows him to lead a reasonably normal, healthy life.

He said Ballarat Community Health offered great support but there was not much general widespread awareness for the condition in Australia because, he felt, there was no treatment to sell - all he had to do was regularly have blood removed.

This was why he was determined to tell his story for Haemochromatosis Awareness Week.

Mr Caldwell said most people were diagnosed as late middle-age or early seniors after a lifetime accumulation of iron.

Haemochromatosis Australia is urging people to find our if their iron levels were right. More details and tips can be found on the organisation's website, ha.org.au, and social media channels. There will also be a podcast Iron Matters featuring interviews with medical professionals.

This story Mike was tired, then found a common condition that could kill him first appeared on The Courier.