The Irish Haemochromatosis Association is raising awareness of the puzzling symptoms of Ireland’s most common genetic disorder during World Haemochromatosis Awareness Week, from 1st to 7th June 2025
An estimated 20,000 people in Ireland are living with undiagnosed haemochromatosis, commonly known as an ‘iron overload’ condition. Also known as the ‘Celtic Gene’, Ireland has the highest rates of haemochromatosis in the world, with one in 83 people at risk of developing it and one in five carrying the gene. Despite its prevalence, haemochromatosis remains one of the least recognised genetic conditions in the country.
Haemochromatosis is a genetic disorder where large amounts of iron are absorbed from the diet into vital organs, in other words ‘iron overload’. Symptoms of haemochromatosis can range from chronic tiredness and joint pain to abdominal pain, irregular heartbeat and liver problems. Early diagnosis is crucial in ensuring effective management on the condition and preventing serious complications if left untreated, such as organ damage or even premature death.
To mark World Haemochromatosis Awareness Week, which takes place from 1st June to 7th June 2025, the Irish Haemochromatosis Association (IHA) is amplifying the conversation and educating the public on the symptoms to promote early diagnosis of Ireland’s most common genetic disorder. The IHA is urging anyone experiencing related symptoms to ‘Get Checked for Haemochromatosis’ to save lives by consulting their GP, who can arrange a simple blood test alongside an iron panel to detect high levels of iron in the blood.
This year, the Irish Haemochromatosis Association has partnered with Meath GAA star and 2023 Tailteann Cup Footballer of the Year, Mathew Costello. Speaking about the awareness drive for World Haemochromatosis Awareness Week, Mathew says:
“I know how important it is to stay on top of your health, both on and off the field. That’s why I am honoured to help raise awareness of the nation’s most common genetic condition in the hope that someday everyone in Ireland will be aware of the symptoms. While it’s not something I’ve personally encountered, the more I learn about it, the more I realise how crucial early detection is. It’s about staying ahead of the game – catching things early can save your life. I’m proud to team up with the IHA this year to spread the word and encourage people to ‘Get Checked for Haemochromatosis’. Health is everything, and we all need to take care of it.”
GAA All-Star and well-known sportsperson David Beggy, who lives with haemochromatosis and has recently been appointed Chair of the Irish Haemochromatosis Association added:
“Haemochromatosis is more common in Ireland than anywhere else in the world, that’s why it is vital that no Irish person should go undiagnosed. As someone living with the condition, I can personally vouch for how manageable it is when caught early and treated and it no longer troubles me. One in five people carry the gene, and one in 83 are at risk of developing it. I’d strongly encourage anyone with a family history of haemochromatosis, or anyone experiencing related symptoms, to get checked. If you recognise any of the symptoms from this campaign, don’t wait – please seek medical advice. Simply make an appointment with your GP and request a blood test. It could make all the difference.”
Professor John Ryan, Consultant Hepatologist at Beaumont Hospital, says: “Early diagnosis of haemochromatosis is crucial, as it allows for the prevention of serious complications. When diagnosed early, treatment can effectively manage the condition. The Irish Haemochromatosis Association has played a key role in raising awareness of Ireland’s most common genetic condition educating the public on recognising symptoms and seeking timely treatment.”
Professor Suzanne Norris, Consultant in Hepatology and Gastroenterology at St. James’s Hospital, said: “Haemochromatosis is a genetic condition, more common in Ireland than in the rest of the world. When an individual has the affected gene, iron can build up in the body, potentially damaging the liver, heart and other organs. If Haemochromatosis is identified at an early stage, it is easily treatable through venesection. Since 2019, many patients can also donate blood through the Irish Blood Transfusion Service, where their blood is desperately needed. So finding people with Haemochromatosis and allowing them to donate blood is a win-win situation.”
This year will see several City and County Councils throughout the country supporting the campaign and joining the wider, international initiative to ‘Light Up Red’, lighting up several iconic public buildings during World Haemochromatosis Awareness Week. Buildings being illuminated in red will include the Mansion House, Dublin, Dublin Convention Centre, County Hall Swords, Swords Castle, Fingal Town Hall and Casino Model Railway, Swords, Cork City Hall, Cork County Hall, Limerick Council Offices, Sligo City Hall, Donegal Public Services Centre and Kerry County Council Buildings, Tralee, Princes Quay and Ashe Memorial Hall Building, Tralee, Killarney Town Hall and Killorglin Area Services Centre, Co. Kerry.
The Irish Haemochromatosis Association is a medical charity and support group for haemochromatosis (or iron overload) patients, families, the medical profession and those interested in haemochromatosis in Ireland. Their mission is to raise awareness and promote early diagnosis and treatment of the condition to ensure that no one in Ireland goes undiagnosed or untreated. For more information, please visit www.haemochromatosis.ie.