Paddy Early, Killea, Dunmore East who is aiming to raise awareness of haemochromatosis.
IT’S a silent killer which is hugely common among Irish people.
Haemochromatosis, which is an iron overload disorder, is known as ‘The Celtic Curse’ because of its prevalence among Irish people.
It is a genetic condition that causes people to absorb excessive amounts of dietary iron which can eventually lead to serious organ damage.
In Ireland, the proportion of the population with susceptibility to iron overload is the highest in the world.
One in five Irish people are carriers of the gene.
“A lot of Irish people have it and that’s why it’s known as ‘The Celtic Curse’. It’s also very common in people living in countries that have strong links to Ireland,” explained Paddy Early, who lives in Killea, Dunmore East.
When I met with Paddy, he recounted his own personal experience of being diagnosed with haemochromatosis.
“A cousin of mine collapsed in Dublin and was diagnosed with it about 20 years ago. Luckily the doctor he went to in the Mater Hospital picked up on the fact that he had haemochromatosis,” he explained.
“As a result, all family members were screened. When my mother rang me to say I needed to be checked, I didn’t know what she was on about. I was lucky that I was diagnosed in my early forties and there wasn’t too much damage done. I’m lucky that my iron is slow accumulating. Some people accumulate it slower and some people accumulate it much faster and it builds up to dangerous levels.”
One study found that 95 per cent of those with haemochromatosis had never heard of the condition prior to diagnosis.
Men generally show symptoms earlier, as women lose blood through menstruation and child birth.
The most common symptoms associated with iron overload are chronic fatigue, joint pain, abdominal pain and loss of sex drive.
The condition is also known as ‘bronze diabetes’.
“Somebody that hasn’t been on holidays may have a bronzed colour as if they were only after coming back from the sun,” Paddy explained.
He outlined how he did not feel particularly different prior to his diagnosis.
“I was tired but I was working hard and didn’t think too much about it. I thought the tiredness was probably to do with the way I was working and maybe not watching my diet closely enough,” he said.
“A lot of the symptoms mirror symptoms of other conditions but if you have any suspicion, ask your doctor to do a blood test just to see because you can save yourself a lot of misery,” he added.
The eldest of seven, Paddy’s brother was also diagnosed with the condition at the same time while other siblings were recognised as being carriers.
“I met people who weren’t diagnosed until they were in their fifties and sixties and there was big damage done. The liver is the main organ which is affected so you have to watch your alcohol intake. It can affect all your main organs – the kidneys, heart, and the whole lot. The only way to treat it is to take blood away as that reduces your iron stores. I have to get checked every six months and if my iron levels are too high I might have to get two or three pints of blood taken out,” he said.
“If you’re lucky enough to be diagnosed early, it’s a matter of discipline and personal responsibility in order to keep it under control. It’s nothing to fear if you keep it under control. You can live a normal life.”
The condition is also known to affect younger people, as Paddy explained.
“When I was going to the Mater originally, there was one young girl of 17 who was on the list for a liver and lung transport and they discovered she had haemochromotiosis. But because she was young, when they got it under control, her body was able to recover and she didn’t need the liver and lung transplant.”
Paddy regularly volunteers in order to raise awareness of ‘The Celtic Curse’.
“We’ve had a stand at the Ploughing Championships the last few years and I’ve also been in Ardkeen Shopping Centre during our awareness week in June,” he said.
“It’s great to see that there is increased awareness about the condition. There is a great sense of satisfaction in knowing that we have achieved something in raising awareness. We also had to raise awareness of it with doctors as well. Some TDs and Senators have had the condition themselves and they have helped raise its profile also.”
He added: “We’re trying to raise awareness of the fact that it is particularly Irish and a lot of Irish people are likely to have it.”
Paddy praised Margaret Mullett of the Irish Haemochromatosis Association (whose husband died from the condition), calling her a “power house of energy”.
An information meeting on haemochromatosis organised by the Irish Haemochromatosis Association (IHA) will take place in The Pembroke Hotel, Kilkenny on Thursday 7th November at 7.30pm.
The IHA is a support group for patients and their families, aiming to raise awareness of the condition among members of the public and those in the medical profession.
Paddy is encouraging all those who are interested in learning more about haemochromatosis to attend this free meeting.
For more information visit www.haemochromatosis-ir.com or email info@haemochromatosis-ir.com.