You’re not alone – thousands across the country share their experiences

You’re not alone – thousands across the country share their experiences

Shauna Coyne & her Dad

My father and the ‘Celtic curse’

The ‘Celtic curse’ is the name popularly given to the condition haemochromatosis, a genetic disorder where excessive amounts of iron are absorbed from the diet, leading to organ and tissue damage and even death, if left untreated.

It’s nicknamed the ‘Celtic curse’ because, while one-in-400 Europeans has the condition, in Ireland it’s one-in-83, and one-in-five of us actually carries the gene. But while having too much iron is not as widely discussed, it is actually a very serious condition, affecting an estimated 40,000 Irish people. Like many people, Westmeath Rose Shauna Coyne (26) had never heard of the condition until it hit close to home.

“My dad Shaun developed stomach problems about eight years ago, and even though he went to various doctors and specialists, they didn’t know what was causing it,” says Shauna. “He also used to get quite flushed and red in the face, which is a very common symptom, especially among men. He wondered if he had high blood pressure, but eventually he was diagnosed with haemochromatosis, which none of us knew anything about.”

“I had suffered with a loose bowel since I was 17,” says Shaun, now aged 55. “It was getting worse, and I thought it might be coeliac disease.”

One he was diagnosed, Shaun had to undergo treatment, which is done simply by phlebotomy, or drawing blood. Once her father was diagnosed, Shauna and her three younger siblings were tested for the illness, as were her dad’s brothers and sisters.

“The results showed that I don’t have haemochromatosis, nor do my brothers and sister,” she says. “We also don’t carry the gene, which is a relief. My dad is one of nine, and two of his brothers were also found to have it. The problem is that the symptoms can be very vague, such as fatigue and itchy or prickly skin, so that makes it hard to diagnose at first. Luckily Shauna works with her dad, so she can also keep a beady eye on his health.

Interestingly, men tend to be more seriously affected by the condition, due to the fact that women menstruate and give birth, so naturally lose blood along the way. Happily, patients can expect to have a normal life expectancy once treated. Sadly, if left undiagnosed and untreated, the illness can have fatal consequences.

Maurice Manning

I feel extraordinarly lucky to have been diagnosed

“I was diagnosed with type 2 diabetes more than 18 years ago and a test for haemochromatosis was one of the initial tests that the GP carried out. It showed up quickly that I had seriously high ferritin levels.

I was not in good health at the time. I had joint pains, I was cranky, tired and generally out of sorts. I realised that if I hadn’t been diagnosed with haemochromatosis at that time, I’d be a dead man now.

I immediately began an aggressive treatment programme for the condition. In fact, I had over 40 phlebotomies – which are a form of prescribed blood donation – to lower the amount of iron in my body. It took almost weekly visits to the hospital over three years to bring the levels of iron in my blood under control. I went in for the phlebotomies at about 7.30am before I went into work. It was a fantastic moment when the haemochromatosis was under control. That was in 2003 and since then, I have only to go two or three times a year for a phlebotomy to keep the condition under control. 

I feel extraordinarily lucky to have been diagnosed when I was. Because, once you’ve had a diagnosis of haemochromatosis, the treatment is straightforward. My liver was damaged somewhat but it seems to be okay now. The problem is that people can become very ill and even die from complications of the condition if not diagnosed early enough. Haemochromatosis is a genetic condition. I am the eldest of 10 and my sister has been diagnosed with it too. 

In my case, the diagnosis of haemochromatosis has meant that I have averted serious liver disease and possible heart failure. I have also averted a catastrophic decline in my quality of life. In fact, I’ve a lot more energy now than during that period of time when I was diagnosed and treated – even though I’m 18 years older.” (Maurice is Chancellor of the National University of Ireland. This piece is an excerpt of an interview with the Irish Times, 2015).

Sean Carter from Galway

Fall from a horse leads to haemochromatosis diagnosis

After a horse riding incident, Sean Carter suffered with backache and chest pain. He went to see his doctor after the fall, who enquired about his colouring.  Confused, Sean asked the doctor if his colour was abnormal. The doctor told him that he had a bronze/grey pallor and that he would conduct a test to investigate.

Due to the doctor’s observations Sean, who was 45 at the time, was diagnosed with Haemochromatosis. 

One indication of haemochromatosis is chronic fatigue, but when Sean experienced tiredness he just thought it came with his age. Other indications include skin pigmentation, abdominal pain, arthritis and diabetes. Many of the symptoms can be found in other disorders. However, when arthritis affects just the first two finger joints there’s a high probability that it is haemochromatosis.

When Sean was first diagnosed his iron levels were very high and he gave 65 pints of blood in just 70 weeks!  However, he has now dramatically reduced his iron levels and he just needs to gives blood a few times a year.

Since Sean’s wife is a carrier of the gene, Sean made sure his four children were tested to see if they had the condition. One of them tested positive, but fortunately he was diagnosed early.

Sean said its incredible how many people he knows who have the disorder.  Since it’s so common he believes that it is important to educate the community