Wednesday 22 August 2018

'I felt like I was walking through sand' - Former Fine Gael politician on trauma of serious disorder diagnosis

Exhaustion is one of the telltale signs of the blood disorder haemochromatosis, which affects 40,000 Irish people. Left untreated it can be life-threatening - so early diagnosis is key to living well with this condition

Haemochromatosis sufferer John O'Brien says he is no longer prone to fatigue thanks to treatment, Photo: Damien Eagers
Haemochromatosis sufferer John O'Brien says he is no longer prone to fatigue thanks to treatment, Photo: Damien Eagers
Dr Maurice Manning

Kathy Donaghy

Dr Maurice Manning was in his early 50's when he noticed he was feeling tired and cranky. A simple test found that he had a condition called haemochromatosis. The former Fine Gael politician and academic believes he'd be dead by now if it had gone undiagnosed and now he's campaigning to raise awareness of the genetic condition which can lead to organ and tissue damage, and even death.

That was 18 years ago and Dr Manning, who's now 75, is in robust health, although he admits he's taking it much easier today than when he was at the height of his political career. While he's recently published a novel, he's also active in the Irish Haemochromatosis Association (IHA), promoting awareness of the condition that's easy to treat if it's diagnosed early.

Up to 40,000 Irish people have haemochromatosis, the most common genetic condition in Ireland, which affects mostly men. Its symptoms include chronic fatigue, joint pain and loss of sex drive.

Professor Frank Murray, consultant in Hepatology and Gastroenterology at Beaumont Hospital in Dublin explains that the condition causes excessive amounts of iron to build up in the body. This happens because the mechanism that controls how your body absorbs iron is switched off in people with haemochromatosis, he says.

Left undiagnosed, iron can build up in the various organs of the body leading to cirrhosis of the liver, heart damage, joint problems and diabetes, although Prof Murray says this is rare today as the diagnostic test is simple and GPs are much more aware of the condition. "It's very rare to see people get into trouble today," says Prof Murray.

"It's not a complicated test and it's relatively straightforward to diagnose and treat," he says.

A simple blood test to check your iron status can confirm or rule out iron overload. A genetic test will confirm the diagnosis.

Treatment is done by venesection or drawing blood much in the same way as you'd give a blood donation. The frequency of how often this happens depends on how much iron or ferritin is stored in the body. While treatment may need to be done frequently immediately after diagnosis, it can then be done less frequently when the iron stored in the body begin to reduce.

For Manning, his treatment initially meant getting a pint of blood drawn 40 times a year. He says this was necessary because the measure of iron in his blood was so high that it was building up in his liver.

"The whole experience for me was fairly traumatic. But because I had a good GP it was diagnosed. I hadn't been feeling well. I was tired and cranky. I was diagnosed with Type 2 diabetes and I asked the doctor what caused it. He gave me a further test which showed I had haemochromatosis," says Dr Manning.

"I didn't know what this condition with the strange name I'd never heard of before was. On the other hand there was a bit of certainty about it; if you did what you were told to do, you'd be fine. I began giving a pint of blood every week for three years. I didn't feel better immediately ­- it took ages but I was reassured that I was moving in the right direction," he says.

After those first three years of very regular treatment sessions, Dr Manning now goes to have blood drawn twice or three times a year.

He says while he's made some simple lifestyle changes, he didn't do anything dramatic. "I was a bit more careful. I cut down on the drink a bit, but I didn't eliminate anything. I ate less meat and more fish and took a bit more exercise - everything in moderation. If I hadn't been diagnosed I'd be dead by now. I would also have suffered a great deal. The iron was building up".

"When I realised how lucky I was, I also realised that there were a lot of people out there who didn't know about this condition. The first step to curing it is knowing you have it," says Dr Manning. However, he says that many people who need to have the treatment must pay €80 when they have blood drawn if they don't have a medical card or health insurance.

"It's €80 a pop. If you're in a few times a month that works out at well over €300. The test should be free," he says.

John O'Brien (60) from Lucan in Dublin is also backing calls for men in middle age particularly, to get tested for the condition.

Three years ago at the age of 57, he began to feel extremely tired. At the time he was holding down a busy job as an engineering manager with Irish Rail and recalls that it was foot to the floor all the time in work.

As he and his wife Caroline were preparing to visit their eldest daughter Eimear (31) in Brisbane, John was also taking scuba diving lessons at the National Aquatic Centre in Blanchardstown in Dublin. When he complained to his diving instructor about how he was feeling, the instructor said given his age he should go and get checked out.

John's GP suggested that he should get a test for haemochromatosis. When it came back positive John says he was not too fazed by it as he understood that medication was not part of the treatment and most importantly it could be treated by drawing off blood.

"Fatigue was my main symptom. I remember falling asleep at a meeting once. It sometimes felt like I was walking through sand in the middle of the day," he says.

While John says many people take an iron supplement if they feel fatigued, this is obviously not a good idea if you've got haemochromatosis, which is why he says people should get tested.

John doesn't include foods with fortified iron in his diet but says he hasn't radically overhauled his diet. "I avoid red meat anyway. You don't need to change your diet dramatically. It's a case of everything in moderation," he says.

John says the diagnosis has changed his life ­- he's no longer prone to fatigue and takes regular exercise. "If it wasn't caught in time it could cause very serious liver problems. It's one of the top disorders the Irish male can have. We are genetically predisposed to having it. But you can easily check if you have it and it's one of the few disorders you can have that you don't require medication," he says.

Margaret Mullet has made it her life's work to raise awareness of the condition that caused the death of her husband George in June 2000.

Margaret, a mother of five grown-up children, says her husband's diagnosis came too late and he died awaiting a heart transplant.

As chair of the Irish Haemochromatosis Association, Margaret says while the condition is being picked up earlier, nobody should be afraid to ask to get tested for the condition which is so common in men in this country.

She says if her husband's haemochromatosis had been picked up in time he would have had a normal life expectancy.

Margaret says the association has written on several occasions to Health Minister Harris regarding the €80 charge for venesection.

"This very unjust charge mainly affects those patients who have neither a medical card nor health insurance. This charge of €80 has a ceiling of €800 per annum. Over 3,000 people have signed a petition to have the charge removed and this information has been forwarded to Minister Harris," she says.

In response to a parliamentary question the minister said his department is considering the issue and a meeting involving relevant personnel in the HSE and the Department is being arranged.

● For more information on the Irish Haemochromatosis Association, check out

haemochromatosis-ir.com

 

What is Haemochromatosis

* World Haemochromatosis Week, which runs this week, aims to increase awareness of the condition which causes too much iron to be stored in the body.

* In this country, the Irish Haemochromatosis Association (IHA), marks its own awareness day today to encourage people to get tested for one of the world's most common genetic conditions.

* The main symptoms of haemochromatosis include chronic fatigue, joint pain, abdominal pain and loss of sex drive. If left undiagnosed and untreated, it can cause liver cirrhosis, liver cancer, arthritis, diabetes and general fatigue.

* Haemochromatosis groups worldwide, including the IHA, have joined forces to raise awareness and improve the rate of early diagnosis of this prevalent, but all too often overlooked condition.

* According to Margaret Mullett of the IHA, one in 83 Irish people are predisposed to iron overload.

* Although haemochromatosis is detected by simple blood tests, support groups around the world continue to hear familiar stories from people with significant health problems caused by a late diagnosis.

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