It was about this time last year when I started to feel fatigued. It was beyond tiredness — I kept falling asleep, which is unusual for me because I’m normally hyperactive. I put it down to my age. I’m 48 and there’s not enough No 7 face cream in the world to keep me young. But when I couldn’t even carry bin bags outside and was practically crying with exhaustion, I realised something was wrong.

My GP thought I was anaemic and did blood tests to confirm this. A week later he called me back to say that wasn’t the case because my iron levels were high. I assumed this was a good thing. He said it wasn’t. He told me if the iron reached a certain level it would become toxic and could poison me.

I made a joke about being able to wear fridge magnets on my head at parties, but he wanted me to know it was serious. He told me he was going to test for a disease called haemochromatosis, or iron overload disorder. It is a genetic condition that causes the body to absorb an excessive amount of iron from the diet. The iron builds up in various organs — mainly the liver — but also the pancreas, heart, endocrine glands and joints.

Haemochromatosis, which was only properly identified in 1996, is more prevalent among the Irish community. It is believed the gene emerged as a method of self-preservation — when there is little iron in the diet, it is beneficial. It is also found in other northern European countries and has been called the “Celtic curse”.

Australian experts published findings in the New England Journal of Medicine last year that showed men with the condition are nearly 30 times more likely than women to develop serious complications such as liver cancer and arthritis. Until the menopause, women get rid of excess iron during menstruation. One of the co-authors, Greg Anderson from the Queensland Institute of Medical Research, says the potato famine could explain why it is common in the Irish. Carriers would have been better able to survive malnutrition.

The diaspora that followed the Great Hunger meant migrants took the gene all over the world, including Scotland, which saw thousands of Irish immigrants arrive in the 19th century. But as it appeared only in later life, fewer cases were detected in the days when life expectancy was shorter.

I am half Irish myself and where I live, in Govanhill, Glasgow, there is a large Irish population, so my GP had come across the disease before. It is estimated that one in 200 people have the regressive gene, but both parents have to be carriers for full-blown symptoms to develop. There are about 5,000 people diagnosed with the illness in the UK.

My emotions were mixed. On the one hand, I had a chronic genetic disorder that would require treatment for the rest of my life. I couldn’t just take a pill and it would go away. On the other hand, it was diagnosed early and can be treated. And at least my fatigue wasn’t down to being lazy or old.

Before this, I had always been fairly healthy, although I had a period of depression in 2003. Mood swings and depression can be linked with haemochromatosis, but that was six years ago so I’ll never know if they were connected.

Other symptoms include fatigue and loss of libido and I thought, okay, I can live with that. There is also a bronzing of the skin, which is ironic because it makes you look quite healthy when you are feeling terrible. When the body makes too much iron there is the potential for it to destroy your internal organs, cause late-onset diabetes, cirrhosis, liver cancer or pancreatic cancer. This brought home to me that it is life-threatening.

The treatment — unfortunately for me, because I am squeamish about needles — is blood letting. I go to the Victoria Infirmary in Glasgow once a fortnight and have up to half a litre of blood removed to avoid further build-up of iron. The first time I went I felt woozy and a bit weak. The second time I passed out. Now they give me two bags of saline to stop me fainting.

It is working. My iron levels have dropped. In a healthy person, 20% iron saturation is okay. When I first saw a doctor, my levels were 92%, but they are now below 50%. The aim is to get them to about 15%. I also take painkillers three times a day for joint pain.

The other big thing for me was telling my family about the disease. I am the first to be diagnosed, but my relatives could be carriers. I’m glad to say that my daughters are not. My Irish grandmother died of liver cancer when she was 48 — the same age I am now — and I have no doubt she was suffering from haemochromatosis. The more I looked into my family history, the more I began to think that the disease is an ugly link with the past.

It has been quite unnerving to think that members of my family might have suffered from the it and not known; it was only properly identified in 1996.

When I was first diagnosed I took it in my stride. There was so much to take on board. But in the last few weeks it has made more of an emotional and physical impact; it has finally hit home that I am never going to fully recover. I can’t eat shellfish because shellfish poisoning is very dangerous for people with haemochromatosis. I have also been advised not to walk barefoot on a beach in case I pick up bacteria from shellfish.

Since being diagnosed, I have been in touch with the Haemochromatosis Society. George Scott, the Scottish organiser, helped put my illness in perspective. In June the society held its first conference in Scotland. I was one of the youngest people there, sitting in a room with other patients. Some did not look well at all. It made me feel scared for them and scared for me. Now I talk to sufferers online. It’s helpful to hear their stories and I feel like I’m part of a gang.

For me, the situation is getting better. The fatigue is still there but I am managing to work full-time. I am limited in what I can do — walking along the street can feel like walking up a hill. I can’t carry bags of shopping up four flights of stairs to my flat but fortunately I have fantastic support. My social life is nil and I have had to change my lifestyle. However, there is still some fight in me. I’m not about to give up.

My next move is to raise awareness of the condition. I will present a petition to the Scottish parliament next month, calling for screening to be made available. So many people are undiagnosed. I am one of the lucky ones.

www.haemochromatosis.org.uk

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