NI businessman Stephen Bogan struggled with fatigue for months... only to find out he had genetic illness 'The Celtic Curse'
The 46-year-old owner of Genesis advertising agency tells Stephanie Bell how a chance conversation with his mum solved the mystery of his constant tiredness. Now he wants to warn others about a debilitating health issue that can be simply treated if detected early enough.
A Belfast businessman is hoping to raise awareness of a little known yet very common genetic condition called The Celtic Curse which, if undiagnosed, can prove potentially fatal.
It was only a chance conversation with his mum that led Stephen Bogan to be diagnosed recently with the condition known as haemochromatosis.
It is an inherited disorder in which iron levels in the body slowly build up over many years and, if left untreated, can lead to organ damage and even failure.
It is referred to as The Celtic Curse because it is particularly common in countries with a Celtic background, such as Ireland, Scotland and Wales.
In fact, people living in Ireland, both north and south, are thought to be the biggest carriers of the gene, with one in five having it and one in 86 developing the condition.
Haemochromatosis can be diagnosed with a simple test and can be easily and effectively treated, but the problem is many people don’t even know they have it — or that it exists.
Stephen (46), who is married to Ros (45) and has two children, James (10) and Jack (8), is owner and managing director of Genesis, a multi award-winning advertising agency.
He discovered by accident that he had haemochromatosis and was diagnosed just three months ago.
With hindsight, Stephen now knows that he had classic symptoms of the condition, such as increased fatigue, but he had been putting that down to getting older.
And it was his shock at discovering he had a relatively common condition, yet he had never heard of it, that has prompted him to raise awareness.
He says: “My experience of haemochromatosis led me to wonder just how many other people in Northern Ireland have this, but go undiagnosed. Certainly, I had never heard of it, nor had any of my family members or friends.
“I have discovered that our island has the highest rate of haemochromatosis sufferers in the world. We’re 10 times more likely to have this condition than in wider Europe which is why it’s been nicknamed ‘The Celtic Curse’.
“Estimates suggest that one in five people in Ireland carry the haemochromatosis gene, with 1 in 86 people developing health problems as a result of it. In Northern Ireland, those statistics would translate to around 21,000 people.
“And that’s why I want to do this article. I think too many people are unaware of this potentially life-threatening condition and just how widespread it is.
“I found out about it by pure chance. My mum mentioned a cousin and an aunt were diagnosed with it.
“I then googled the condition, saw it was hereditary and asked my GP about it — especially given the familial link. That led to a blood iron test (which showed high levels of ferritin and transferrin saturation), and which then prompted a gene test to confirm. All very quick, once I knew what I was looking for.
“General blood tests won’t always show it up unless you know what you are looking for so a specific blood iron test is needed.
“And that’s the problem. People don’t even know it exists so they don’t know to look for it.”
The exact prevalence of haemochromatosis is unknown, though surprisingly it is thought to be the most common hereditary disorder in Caucasian populations. In people of Northern European descent the prevalence is estimated to be as high as one in 227 with around 10% of the Caucasian population estimated to be a “carrier”.
Some people who have the gene do not go on to develop the symptoms of the disorder, making it difficult to determine the true prevalence.
Haemochromatosis is seen more often (and tends to be more severe) in men than women.
Some researchers believe that this may be due, in part, to a woman’s monthly blood loss through menstruation. Consequently, iron accumulation is slower in women than men, and the average age of diagnosis for women is approximately 10 years later than in men and usually occurs after menopause.
Haemochromatosis symptoms normally arise when people are in their 40s and 50s.
Stephen’s diagnosis at 46 is typical and as a result his wider family has now also been tested, with a number of his cousins diagnosed, convincing him that the figures could be even higher than suspected.
To be symptomatic, it is thought that both parents must at least carry the haemochromatosis gene.
He says: “In my case, I had four uncles and aunts by marriage, all unconnected, who married into my mother’s side of the family. So, every single member of four sets of parents had the haemochromatosis gene. Extrapolating my family’s experience suggests that maybe the official figures are underestimating the true prevalence of haemochromatosis.”
Stephen had been struggling with fatigue for months which he now knows was due to the condition. He simply wrote it off as part of his hectic lifestyle as the owner of a busy advertising agency and father to two young boys.
His treatment couldn’t be easier — and also a gift to others. He simply donates a pint of blood every now and then to keep his iron levels low while in turn he is helping to build up the blood bank with iron-rich donations.
Stephen realises how fortunate he is to have been diagnosed as he is all too well aware of how silently the condition can seriously damage the body if it remains undetected.
He says: “Part of the problem is that too often the symptoms of haemochromatosis are not recognised. The two main symptoms reported are fatigue/weakness and aches and pains.
“For me, I noticed tiredness and fatigue and some general aches and pains, but I just thought it was because I was getting on. I jog regularly and it started to feel a bit harder-going. Even in work some projects just felt a bit tougher to get through.
“Feeling a bit tired is such a non-specific thing and can be so easily dismissed. People generally don’t go to the doctor with fatigue and, to be honest, I barely noticed it. If my mother hadn’t mentioned it I don’t believe I would have been diagnosed any time soon.
“The problem is that if it is left untreated, it quietly damages vital organs through a build-up of iron, including the liver, pancreas and even the heart, as well as being linked to arthritis and diabetes. It can spread to the skin and at that stage it is generally more advanced.
“The good news is that it is very easily detected and with early treatment people with haemochromatosis will live a normal and full life.
“The treatment for the vast majority of people with too much iron is simply to give a pint of blood every so often (settling down to around three to four times a year). This keeps iron levels in check. How many potentially life-threatening health conditions are so easily managed?
“Not only does this successfully keep iron levels in check, it also provides the Blood Transfusion Service with much needed iron-rich blood. A win-win.”
Stephen believes that anyone who is diagnosed with the condition has a duty of care to tell other family members.
He adds: “Forewarned is to be forearmed. Just as many people in Northern Ireland can have too little iron (anaemia), many others will have too much iron.
“And that’s what happens with haemochromatosis. Iron can build up to toxic levels within the body and can then cause incremental damage, especially to organs.
“But you may not notice this happening initially, until there is a problem. So people need to be aware of this common genetic condition. Since I was diagnosed I already feel my energy levels returning and I have only had three sessions of giving blood.
“I went three times over a fortnight and gave 150mg of blood which had been enough to keep my iron count to normal levels. It is as simple as that.
“My motivation for doing this is out of conscience — I hate the idea of people suffering out of ignorance — especially given the simplicity of the treatment to resolve this. And now that I know what I know — I feel I need to share that to raise awareness.”
For further information go to www.nhs.uk/conditions/haemochromatosis/
Signs and symptoms to look out for
Chronic fatigue, weakness, tiredness, lethargy
Joint pain including generalised aches and pains
Skin darkening as iron deposits build up
Sexual dysfunction — loss of sex drive