​NI man opens up on diagnosis of ‘Celtic curse’

After years of suffering with unexplained health problems, including tiredness, muscle and joint pain, Chris Harrison, 45, was recently diagnosed with haemochromatosis, a condition which causes sufferers to absorb too much iron from their diet. Its accumulation around the body can cause organ damage and increase the risk of liver cancer.

Haemochromatosis is the most common genetic disorder in the Western world, with instances highest in Northern Europe, particularly in Ireland, Scotland and Wales, which is why it is referred to as the Celtic Curse.

Up to one in 10 people in Northern Ireland are at risk of genetic haemochromatosis.

Chris, a father-of-two, who is married to Claire, and is managing director of a busy PR firm, JComms, explained that his diagnosis came about almost by accident.

"Last August I had an eye condition called uveitis (inflammation of the middle layer of tissue in the eye). Off the back of that my GP ordered blood tests and they came back showing very high iron levels.

"They were so high the GP asked for them to be re-done just to check in case there was something wrong with the test, but they came back very high again.

"Normal iron levels are around 50 micrograms per litre, if it's 300, it's considered to be abnormal and they probably then investigate and look into whether you have haemochromatosis

"If it's as high as 1,000 they consider that to be quite severe and they'll red flag it to the hospital. In my own case, the levels were about 2,200.

"That began a conversation with the GP where I was telling her about all the symptoms I had had over the years. She red flagged a referral to a liver consultant at the Royal Victoria Hospital, then things moved very quickly.”

Chris underwent a number of blood tests and had scans of his liver, heart, pancreas and kidneys.

"One of the blood tests that had been done was a genetic test and it showed I had the faulty gene. A consultant at the Royal gave the official diagnosis of haemochromatosis in December (2022).”

There's currently no cure for haemochromatosis, but there are treatments that can reduce the amount of iron in the body and reduce the risk of damage.

Phlebotomy is a procedure to remove some of the patient’s blood. This may need to be done every week at first and can continue to be needed two to four times a year for the rest of their life.

Chelation therapy is where the patient takes medicine to reduce the amount of iron in the body; this is only used if it's not easy to regularly remove blood.

Chris is due to begin phlebotomy treatment this month.

“I will be going into the Royal every fortnight to have 500ml of blood withdrawn at a time and eventually that should bring the levels of iron in the blood down to normal levels.

"Then the frequency of the blood withdrawals will reduce and it will just be about maintaining iron at the normal levels. Eventually when it gets to what is called the maintenance phase, the blood can be used for donation.”

Chris is keen to stress that if haemochromatosis is diagnosed and treated it can be well managed, with normal life expectancy.

But he added that if left undiagnosed it can be quite serious.

“Untreated it leads to iron overload, where the body is unable to process the excess iron, which is extremely toxic, so it can cause liver disease, cancer, heart disease, chronic fatigue, diabetes, joint pain and a whole range of other conditions."

Chris encouraged anyone with any unexplained symptoms to see their GP.

“Early diagnosis saves lives, but it also saves money, because if someone is getting treated for haemochromatosis before they have liver or heart problems, that is more cost-effective to treat than waiting until they have liver cancer or heart disease.

"Men with haemochromatosis have 10 times the risk of developing liver cancer, than those who don’t, twice the risk of dementia, quadruple the risk of liver disease, double the risk of arthritis, they are 50 per cent more likely to suffer pneumonia and diabetes. Obviously if you get diagnosed and treated your risk of those conditions reduces.”

Chris said he feels “quite positive” about his diagnosis.

"I am grateful that it has been picked up and I am having treatment.

"They recommend that family members be very aware of it, so my siblings have been tested and my wife will take a genetic test and if she is carrier of the gene then our two children will be at risk, but if she’s not, then they won’t be.”

Haemochromatosis UK is a patient-run UK charity that provides information and support to people living with the condition.

It said less than 2,000 people in NI have received a formal diagnosis.

Chief executive of Haemochromatosis UK , Neil McClements said: “It runs in families but is readily treated if diagnosed early. Early diagnosis saves lives and so screening for the condition can be a life saver.”