MY HEALTH EXPERIENCE: THERESE O'CONNOR:Haemochromatosis can be fatal if it is not treated
ABOUT 10 YEARS ago, one of my sisters mentioned in passing that my dad’s sister in Canada had been diagnosed with haemochromatosis, an iron overload disorder. She was told by her doctor to mention it to her family members as it is a genetic disease which can run through families. I wrote it in my diary at the time and forgot all about it for years.
I was at my doctor for some other reason in 2008 when I mentioned the fact that my aunt had haemochromatosis. He gave me a blood test and rang me back a few days later to tell me my iron levels were very high. He brought me back in for a genetic test, a simple pin prick, and I got the results back fairly quickly. I was diagnosed with haemochromatosis.
I was a bit taken aback at the time as I had no symptoms apart from tiredness. When I looked it up, I found out that haemochromatosis can be fatal if not treated and it is associated with diabetes, liver and heart disease, and lots of other problems. This frightened me.
My three sisters and mother had to have the genetic test. One of my sisters, Radie, was also diagnosed with haemochromatosis a year later and my mum was found to be a carrier. Looking back since my own diagnosis, I think my dad probably had the condition. He was always complaining of chronic fatigue and pain in his joints which he put down to hard work.
Dad died of multi-organ failure in 1998 when he was in his early 70s. It’s such a shame because it really looks like he had haemochromatosis and if we had known, he could have been treated. If one parent has haemochromatosis and the other is a carrier, on average half of the children will develop the condition and the other half will be carriers. My dad probably had it and two of his four daughters have it.
Before I was diagnosed, I was always tired, which I put down to everyday living. I was 40 years of age, my eldest child was 18 and I had no babies, so I shouldn’t have been feeling that tired. I was always taking vitamin C supplements and other pick-me-ups, not realising that they were the worst things I could take because vitamin C aids the absorption of iron and my body was already absorbing too much iron. I was told to cut those out straight away.
The level of iron in my blood was so high that I had to go to St James’s Hospital to have a pint of blood taken off every week for three months, just like giving a blood donation every week. Having the blood removed was tiring in itself, but I still felt better after it. I felt more of a zest, more alive and I wasn’t falling asleep all the time.
My sister, Radie, does not need to have blood taken off as much, she goes twice a year. It’s still not known why some people absorb iron faster than others. I drink tea after a meal now because the tannin stops the absorption of iron and I drink red wine instead of white as it has tannin in it.
Every three months I go into St James’s for a blood test. The phlebotomy nurse there, Liz Ellis, is great. If the test shows that my iron levels are up, she rings me and I go back in to have a couple of pints (or units) of blood taken off.
I was in a health shop recently where I overheard a woman complaining of terrible tiredness. The shop assistant was showing her iron supplements and mentioned that she should get checked for anaemia. Everybody thinks about anaemia when they are tired but nobody thinks about haemochromatosis, and the worst thing you can do is take more iron if you have it. People should get their iron levels checked out before they immediately run out for iron supplements. Iron is in so many things these days – most cereals and breads are now fortified with iron.
Overall, my haemochromatosis doesn’t affect my life too negatively. I am lucky I caught it early enough. I work in a construction firm and my employers have always been very accommodating. I come up from Kilcock in Co Kildare to St James’s in the morning to get blood taken off and go back to work afterwards. I find I tend to be very tired the days I get blood taken and they make allowances for this at work.
I rang the Irish Haemochromatosis Association after I was diagnosed as I wanted to learn more about the condition. I found them very helpful. They sent me out some information leaflets and I decided to become a member.
Now that my son has turned 18, we are going to have to get his serum ferritin levels checked and if they are high, he will have to be genetically tested for haemochromatosis. It’s a very silent condition which is why so many people, like my father, may be unaware that they have it and it’s something that can be so easily checked for.
It’s a very simple condition to keep under control. I don’t like needles and I hated the thought of getting blood off in the beginning – it sounds so medieval – but it’s the only way of controlling my condition and I feel so much better afterwards that it’s well worth it.
Haemochromatosis Awareness Day will take place on Thursday when representatives from the Irish Haemochromatosis Association will be on hand to give information, advice and support in 34 shopping centres across the Republic. See haemochromatosis-ir.com, e-mail info@haemochromatosis-ir.com or tel: 01-8735911 for more information
Haemochromatosis: what is it?
Haemochromatosis is an iron overload disorder that is genetic and is especially prevalent among the Irish and other Celtic people. It causes people to absorb excessive amounts of dietary iron which, over time, may lead to serious organ damage.
The condition is underdiagnosed and under-reported, according to the Irish Haemochromatosis Association (IHA). However, it is estimated that one in 83 people are pre-disposed to this disorder and 40,000 people have been diagnosed with it.
Symptoms include chronic fatigue, joint pain, diabetes, irregular heartbeat, enlarged liver and loss of sex drive. The accumulated iron affects the liver, heart, pancreas, endocrine glands and joints. It can lead to impaired function of these organs and eventually to disease and organ failure.
The IHA says that those genetically disposed to the condition and/or suffering from symptoms should visit their GP for a simple blood test to check their iron status and confirm whether or not they have iron overload. A simple genetic test will then confirm if the person has haemochromatosis.
Treatment involves removing excess iron from the body by removal of blood and is called venesection or phlebotomy therapy.
Treatment for haemochromatosis is ongoing for life and may require blood to be removed once or twice yearly depending on how quickly the iron is reaccumulating.
The IHA is a support group for haemochromatosis patients and their families. Its aim is to raise awareness of the condition as early diagnosis and treatment prevents organ damage and may even save lives.
