Man diagnosed with rare ‘Celtic Curse’ blood condition
A man has told of his relief despite being diagnosed with the “Celtic Curse”, after finding out he was living with haemochromatosis.
The condition is known as the Celtic Curse because it affects around 1 in 113 people on the island of Ireland. It’s a genetic condition which leads to abnormally high levels of iron in someone’s blood and, if untreated, can cause extensive damage to the organs.
“Your 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 why that’s the case,” Chris Harrison told Belfast Live. “If it’s is 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 are about 2,200 so that really is quite high and whenever that was discovered, the GP was quite concerned about it and red flag referred me to a liver consultant at the Royal Victoria Hospital.”
The 45-year-old said he had been experiencing symptoms for a while but keeps himself fit and healthy and has even completed some stages of the Tour de France in the past.
“My symptoms were primarily fatigue/tiredness, a feeling of muscle weakness, joint and muscle pain and abdominal pain,” he said. “I guess for a long time I’ve had some symptoms that either hadn’t been diagnosed or attributed to something else, so in some respects, it was a bit of a relief to know what some of the symptoms probably were.
“But at the same time, it was quite concerning because it all happened very, very quickly.
“They did a lot of blood tests, I was in Musgrave Park Hospital for blood tests as well as my GP and was sent to City Hospital for scans of my liver, kidneys and other organs and then was with the consultant in the Royal. So, yeah, it was a bit of a worrying time, but thankfully the scans of the organs seem to be OK, so it would suggest that it was caught in time and hopefully at this stage, no major damage done and they can start the treatment.”
That treatment will start this month for Chris all being well and he explained what that would entail.
“The treatment involves blood withdrawals, I’m told that it will be every fortnight for the foreseeable,” he added. “It’s 500ml of blood that they withdraw, so just under a pint each time. Because my levels are quite elevated, I’m told it might be a long time for them to come down and then when they do come down, they reduce the frequency of the blood withdrawals, so it may eventually be a few times a year.
“The good thing is though that when the iron levels come down to a more normal level, the blood that they take to maintain it at that normal level can then be donated to people that need it.”
Chris had tweeted about his diagnosis, after learning that Haemochromatosis UK, the organisation set up for people with the condition, were keen to raise awareness.
He said his own work as Managing Director at communications and PR consultancy JComms meant he felt an obligation to share his experience and to help others to spot any tell-tale signs.
“At one point they were investigating me for other things that could have been a lot worse, so whilst it’s not amazing to have it, I would advise people to suss out whether they feel they have symptoms,” he said. “And I guess of all the things you could get, it’s not as bad as a lot of things that people have, so I sort of feel quite fortunate and positive about it.
“I saw the best of the NHS as soon as my high iron levels were discovered – swift referral to a liver consultant and a tour of Belfast hospitals for multiple blood tests, liver, kidney and other organ scans, and other investigations.
“My GP has been fantastic. I feel fortunate to have been diagnosed and to have something that can be so well managed.
“I was a bit reluctant to do the tweets but Haemochromatosis UK are trying to create more awareness of the condition and given what I do for a living I felt a bit obliged.”
The common symptoms of genetic haemochromatosis are:
- Arthritis; may affect any joint but particularly common in the knuckle and first joint of the first two fingers (the bronze fist). If arthritis is found only in the first two finger joints this is highly suggestive of GH
- Chronic fatigue, weakness, lethargy
- Abdominal pain; sometimes in the stomach region or the upper right hand side, sometimes diffuse
- Neurological/psychiatric disorders; impaired memory, mood swings, irritability, depression
- Sexual disorders; loss of sex drive, impotence in men
- Absent or scanty menstrual periods and early menopause in women
- Bronzing of the skin, or a permanent tan, or grey tone
- Cardiomyopathy; disease of the heart muscle
- Diabetes (late onset type)
- Pituitary or adrenal issues (eg Addison’s Disease)
- Liver disorders; abnormal liver function, enlarged liver, cirrhosis, liver cancer
- Decrease in body hair
For those wanting to find out more, there if further information on haemochromatosis here.
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