A man from Belfast has opened up about the "Celtic Curse" genetic disorder he has been diagnosed with, a condition that affects around 1 in 113 people on the island of Ireland. Chris Harrison has found out that he is living with the "Curse" or haemochromatosis, as its known by its correct medical term.
The condition causes abnormally high levels of iron in the blood stream and can lead to extensive organ damage if it remains untreated. Commenting on his own experience, Chris told Belfast Live: "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. 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 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." Chris, 45, had been experiencing symptoms for a while, despite being fit and healthy to the point that he has even completed 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 added. "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. 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 has been done and they can start the treatment."
Chris will now begin treatment this month, which will include withdrawing just under a pint of blood from his body every two weeks "for the foreseeable".
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"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," he explained. "The good thing is 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.
"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 feel fortunate to have been diagnosed and to have something that can be so well managed."
Chris is sharing his story to help Haemochromatosis UK's attempts to raise awareness of the condition.
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 is further information on haemochromatosis here.
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