Latest news with #CelticCurse
Sunday World
2 days ago
- Health
- Sunday World
Dad-of-three reveals how giving blood helped him get diagnosed with the 'Celtic Curse'
Ireland has the highest prevalence of haemochromatosis — sometimes called the 'Celtic Curse' — in the world, with 1 in 83 people at risk and 1 in 5 carrying the gene. 'Once you know you have it, it's fine — because it is so treatable.' Everyone knows that giving blood saves lives, but what Jim Jackman could never have realised was that this selfless act of generosity would also save his own. The 68-year-old former RTÉ broadcast technician and father of three was diagnosed with haemochromatosis eight years ago — a genetic disorder where the body absorbs and stores too much iron. Over time, that iron builds up in vital organs like the liver, heart, and pancreas, leading to irreversible damage — or even premature death. It's a slow, silent killer, often misdiagnosed as fatigue, arthritis, or depression. Spotlighting his life with the disease in light of World Haemochromatosis Awareness Week (1–7 June 2025), the Dubliner wants people to realise just how common this life-threatening affliction is — and how important it is to know the symptoms. It could just save your life. 'I was diagnosed with haemochromatosis eight years ago and I'm alive for two reasons. Number one, I had a good GP who picked up on it, and the other reason I'm alive is I was a blood donor all my life.' Jim says it's important to know about the condition Ireland has the highest prevalence of haemochromatosis — sometimes called the 'Celtic Curse' — in the world, with 1 in 83 people at risk and 1 in 5 carrying the gene. Yet despite being Ireland's most common genetic condition, it remains alarmingly undiagnosed. Jim's family history tells a tragic story of the dangers of the condition when it goes undetected. 'My dad died when he was 58. He was a member of An Garda Síochána, and he just always had terrible stomach problems. It wasn't known about then, so he died at the age of 58. His father died aged 57. I do count myself as lucky. I feel sorry for my father that he died so young. I feel so privileged to still be alive so I can spend time with my family and watch my beautiful grandchildren grow up — I'll forever be grateful for that.' Damage from iron overload can be serious and irreversible. After diagnosis, patients often undergo scans to assess organ health. 'The first thing that happens is they send you for liver scans and scans of your body to see what damage is done. It goes into all your organs. It will eventually kill you. So once you know you have it, it's fine — because it is so treatable. I will never forget how worried my wife was. At sixty years of age, we thought there had to be damage done, but everything came back clear.' 'Once you know you have it, it's fine — because it is so treatable.' News in 90 Seconds - June 11th Although haemochromatosis is treatable, many go undiagnosed for decades. It's estimated that over 20,000 people in Ireland could be living with it unknowingly — a fact Jim finds shocking, especially given how easily it can be picked up. 'When my GP checked my ferritin levels, they came back as 1,400, whereas the normal level in men ranges from 30–300. That's when my blood was sent off for a genetic test to confirm it.' Jim had been donating blood since he was 18. Ironically, that may have saved his life — but it's a fact that frustrates him too. 'I was giving blood from the age of 18 for about 42 years… The cure for haemochromatosis is to give blood because basically your body is full of this poison… And the way you get rid of too much iron in your body is to give a pint of blood. "I was doing that for many years and it was obviously helping me. If I hadn't done that, I think by 60, the damage would be irreversible. But it surely should have been picked up on during all that time.' One in 83 Irish people is at risk of haemochromatosis Urging family and friends to get tested, it was discovered that the condition was also prevalent in his own family. 'I told my sister and she got checked, and her levels were crazy high — crazy high. My children were also tested: my daughter has haemochromatosis, and my son is a carrier of the gene.' Haemochromatosis can mimic many common conditions, like arthritis or chronic fatigue. For Jim, the symptoms were masked by another illness. 'I'm a bit complicated from the perspective that I have rheumatoid arthritis. So one of the symptoms of haemochromatosis is stiffness… and feeling tired, lack of sexual, no interest in sex.' Once diagnosed, treatment is simple: regular removal of blood — just like donating. 'For me, it's two times a year. For my sister Maura, it's about four times.' Jim believes more awareness is critical and wants haemochromatosis included in Ireland's newborn heel-prick test — something already being considered in the UK. 'The heel prick test is done to pick up on certain life-threatening conditions… They're starting to do it in England now — they test for haemochromatosis.' Jim's story isn't just about his own health — it's about legacy. He urges families to talk, test, and take action early. 'The main thing about haemochromatosis is it's the best condition you could have — because once you know you have it, you can deal with it… There's nothing to be afraid of. What there is to be afraid of is finding out later in life… and what damage it's already done.' Professor John Ryan, Consultant Hepatologist, explains the need to be vigilant about symptoms that could potentially save your life: 'Because early symptoms of haemochromatosis — such as chronic fatigue, joint pain, abdominal pain, and low mood — can be non-specific and attributed to many other causes, haemochromatosis can be initially difficult to diagnose. Most people don't have any symptoms, as the iron builds up very gradually over years. If you are experiencing any of these symptoms or you have a history of haemochromatosis in your family, go to your GP and ask for an iron profile blood test. If your ferritin and transferrin saturation levels are elevated, a genetic test is recommended to confirm a diagnosis of haemochromatosis.' The Irish Haemochromatosis Association (IHA) is a life-changing medical charity and support group for haemochromatosis patients and their families. For more information, see
The Courier
06-06-2025
- Health
- The Courier
Dundee woman's shock at 'Celtic Curse' diagnosis - the most common genetic condition in Scotland
Roz Langlands has been very active throughout her life so when she felt completely exhausted after walking round the shops in Dundee she knew something was wrong. The 71-year-old, who lives in the city, not only felt very tired but she also noticed her mood had dipped. Initially she put it down to the stress she and her husband Gary had experienced after getting building renovation work done on their home. But the exhaustion didn't go away. 'Around February/March 2023 I was feeling very tired and really low,' Roz explains. 'But I thought it was just after all the hassle we had had with our home. 'Then one day Gary and I were walking from the old Marks and Spencer's to the Overgate and it left me exhausted. 'I am not keen on going to the doctor – I just thought it might get better on its own as time went on but it didn't. 'So eventually Gary persuaded me to go.' In November last year at Hawkhill Medical Centre Roz had four or five lots of blood taken to test for various things. 'The results came back showing there was too much iron in my blood,' she says. 'My GP then took another blood sample to go to a specialist lab. 'It was tested and when it came back it confirmed I had Genetic haemochromatosis (GH). 'It was a shock and I couldn't get my head round it. All I could think was what, why, how?' Genetic haemochromatosis is Scotland's most common genetic condition. It is a disorder which causes too much iron to build up in the body. The iron overload condition, which is caused by an inherited genetic mutation, is common in people in Scotland and Ireland who have a Celtic background. This is why it is often referred to as the 'Celtic Curse'. If untreated a build-up of iron in the body damages vital organs over time. It can also cause life-threatening complications including liver disease, cancer and heart disease. Symptoms include: Feeling very tired all the time, brain fog, mood swings, depression and anxiety, weight loss, weakness and joint pain, especially in the fingers. It is believed around 1 in 113 people in Scotland are pre-disposed to the condition, but fewer than 1 in 20 have been diagnosed. Dundee's Roz was taken aback when she was given the 'Celtic Curse' diagnosis because she had never heard of it before. And she wasn't aware of any cases of the disease in her family. She says: 'I remember thinking how can this possibly be? 'Because I had never heard of anything like this in my family I don't really know a lot about it. 'My mum passed away when she was 83 and had dementia for about 20 years. 'But both my parents had the mutated gene and passed it on to me. 'They must have both been carrying the gene for me to have the condition – that's what the haematologist said. 'It's the most common genetic condition in Scotland and there are a lot of people who could be carriers and they don't know.' Roz believes the amount of iron in her body could have been building up post-menopause over the past 15 years. The normal range for ferritin – a protein that correlates with the amount of iron stored in the body – varies by biological sex. For men 'normal' is located between 30 and 300 mcg/l and for women it is between 30 and 200 mcg/l. Once levels hit 1,000 it can start affecting the organs. 'I was told my levels were at 2850 and as a result my liver is damaged because it is full of iron. 'The body then looked for other organs to start storing it.' 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. The two main treatments are venesection (phlebotomy) and chelation therapy. The treatment Roz has been having is a regular venesection which is similar to blood donation. It is a procedure to remove blood to bring iron levels down. 'Every fortnight I have to go to Dundee Blood Donor Centre to have blood taken out until my iron levels come down,' she explains. 'I started off having 200 mils taken out. It's now up to 300. 'What happens is the body naturally replaces that blood which effectively dilutes the iron. 'I am still in the early stages of the treatment – it's been about three months now. 'So far it hasn't made a difference to how I feel. 'But we spoke to someone else having the same treatment and he said it was more than six months before he started feeling better. 'I am hopeful it will help in the long run.' The former PE teacher has been very active throughout her life. But now, due to having haemochromatosis, she struggles to walk any distance. 'Also if I do anything in the house – even slight exertion for ten minutes – I need to lie down afterwards. 'If I go to meet someone for a coffee or go out to dinner with my school chums, the next day I am wiped out.' Roz has also had to change her diet – this includes cutting out alcohol. 'I am not allowed to drink anymore (alcohol consumption can cause further liver damage). 'And I am not supposed to eat any red meat because it has iron in it. 'What I can have is chicken, fish, eggs and leafy greens. 'But I have to be careful about all sorts of foods and eat things which have a low iron content.' Roz is grateful for the support of husband Gary, 68, who is chairman of Dundee Alexandria Twinning Association. He has helped her around the house when she has struggled with fatigue. 'I don't think I could have coped without his help,' Roz says. 'He has always cooked though and does the majority of things – apart from ironing. 'I try and do a bit of housework but he will tell me to go and have a lie down. I spend a lot of time sitting or lying down.' Roz feels passionate about trying to raise awareness of Genetic haemochromatosis because if caught early, organs can be prevented from being damaged. 'If you find out you have the condition early enough there is treatment available to stop your iron levels from going up,' she explains. 'They can then be brought down before they start damaging your organs. 'It can be life shortening if you don't catch it early on. 'If I had caught it earlier I might have only needed two or three months of treatment. 'Or if my parents had known, I might have had genetic testing which would have caught it earlier.' She adds: 'Apparently 90 per cent of people who have this condition are unaware. 'This is why I just want as many people as possible to know this disease exists. 'So that if they have some of the symptoms, they can get tested and have treatment before it causes irreparable damage.'
