The 'iron overload' behind dad's 20 years of sickness

"Ironman, yep, been called that," he nods. "People say 'don't go near any magnets now' or they want to know whether I set off the alarms when I try to get through airport security.

"I can laugh now," he says, "but it wasn't much fun for a long time. Fact is, if I hadn't been diagnosed then I probably wouldn't be here right now."

Indeed his condition, known as "iron overload", could have led to any number of potentially deadly conditions – and three of them, heart disease, diabetes and liver disease – are among Scotland's biggest health concerns.

And although he didn't know it at the time, simply giving blood was all it would take to keep him healthy.

Unfortunately for Stuart, a 47-year-old plasterer and slaterer, his body had been storing toxic iron in his organs for 20 years before he was finally diagnosed, leaving his liver irreversibly scarred.

"I'd felt unwell since my early 20s," he continues. "When I opened the letter from the hospital that said I had haemochromatosis it was such a relief," he says.

"I didn't know what it was exactly, but just to know that what I had actually had a name, something real to prove there was something wrong – because I was actually starting to doubt myself.

"Just having that really made me feel a lot better."

Haemochromatosis is the result of a genetic blip which makes the body store massive amounts of iron, primarily in the organs.

In Stuart's case, despite being nearly tee-total, his liver was already showing signs of damage similar to that of a hardened drinker.

"The condition can actually show up in such a wide variety of ways," explains Stuart, who lives with wife Heather, 47, and children David, 14, and Marie, 15, in Windsor Drive, Penicuik. "Some people have heart problems, some have diabetes because of it. For me, it was the liver."

It's thought the condition could be behind many Scots' heart, liver and diabetes problems – some believe it's also linked to multiple sclerosis and dementia – yet few will ever have been tested for it.

For according to haemochromatosis patient and campaigner George Scott – whose Leith-born non-drinking father died from cirrhosis of the liver later found to be the result of "iron overload" – testing for it would cost just pennies yet is rarely done until patients are already in need of hospital care.

Which is why he has launched a petition which urges the Scottish Parliament to introduce a national screening programme for newborns when they have their "heel prick" test and for an "iron overload" check to be included as standard in general blood tests.

"Many patients are only being diagnosed once they reach secondary care – by which time they are already ill," he says.

"Unfortunately, by that time the damage for many is already done – they have heart or liver problems that could have been prevented."

He adds: "My father was teetotal but he died from cirrhosis of the liver in 1977. It wasn't until 1994 that I had a blood test after stomach problems and it emerged my iron was too high – and that my father had the same 'iron overload' gene which caused his liver problems."

Around one in 200 people is believed to have the genetic mutation that can cause haemochromatosis. The number who go on to develop it is around one in 600.

Yet treating it is devastatingly simple – if, Stuart grins, "a bit medieval".

"Basically, it just involves blood letting, or giving blood," he says. "You have to give a lot at first – for the first year I gave 50 pints of blood which probably made me feel worse than I'd ever felt. By the time I was half way through it, I was really wondering whether I could keep going, I felt so bad.

"But now, thankfully, it's only around once a month."

He had struggled with bouts of illness, chronic tiredness and debilitating ulcers for years, yet test after test had failed to find anything wrong.

When he arrived at hospital on New Year's Day 2004 with the symptoms of a chronic hangover and signs of cirrhosis of the liver, medical staff even started to question whether he was a 'silent drinker'.

"They were saying: 'How much have you had to drink?' but I don't drink.

"After a couple of days with my symptoms continuing, they decided it had to be something else that was wrong."

The blood test for haemochromatosis costs just 44p and gives an almost immediate result. But still it was another year before one hospital senior medic hit on testing Stuart for the condition.

"It was the last thing on his list. It was such a relief to get that letter so I can start getting back to normal."

The test showed Stuart's iron level was 25 times higher than it should have been.

And although Stuart's blood wasn't suitable for the national blood bank, George explains that if people are diagnosed early enough and regularly give blood, their iron levels can be kept in check and their donations even used to benefit others.

"Unfortunately, one of the problems is that the symptoms iron overload can create can be seen as a wide variety of other things.

"But while the doctor might do a liver test or a cholesterol test, they don't typically tick the box for haemochromatosis."

Stuart's diagnosis meant other members of his family were also tested for the genetic condition. Three close relatives tested positive.

"It's quite concerning when they keep talking about Scotland having this terrible rate of heart disease or liver problems and diabetes and it's all put down to people's diet or drinking habits," he adds.

"Yet it might well be that they have this condition which is making them sick."

The simple blood test can change their lives, he adds.

"I had 20 years of feeling ill which I suppose could have been avoided."

Find out more about iron overload from the Haemochromatosis Society UK at www.haemochromatosis.org.uk or call 0208 449 1363.

Genetic disorder affects 1 in 200

HAEMOCHROMATOSIS is a genetic disorder which causes the body to absorb an excessive amount of iron from the diet.

The iron is then deposited in various organs. The liver is mainly affected, but the pancreas, heart, endocrine glands and joints can also be affected.

Too much iron in the liver can cause it to become enlarged and damaged. Symptoms can range from chronic fatigue to stomach pains, arthritis, diabetes, liver disorders, memory loss, depression and heart disease.

Haemochromatosis was once thought to be exceptionally rare, however, recent surveys show Northern Europeans have a 1 in 200 chance of developing it. It is now recognised as one of the most common genetic disorders.