Haemochromatosis: Thousands in NI Offered Testing for a Genetic Condition with Celtic Origins
Many residents in Northern Ireland are being offered free genetic testing for haemochromatosis, a condition often referred to as the 'Celtic Curse'. This disorder is more prevalent in people of Irish and Scottish descent and can lead to excessive iron absorption, causing damage to various body parts.
Symptoms vary widely, including chronic fatigue, joint pain, memory issues, abdominal pain, and skin conditions. If left untreated, haemochromatosis can result in severe long-term health complications.
The BBC previously reported concerns about insufficient testing in Northern Ireland due to cost constraints. The Department of Health's policy is to screen for genetic haemochromatosis when symptoms appear. However, a charity, Haemochromatosis UK, aims to gather more data on undiagnosed cases in specific Northern Ireland regions.
Haemochromatosis UK will provide free genetic screening to up to 23,500 households in Irvinestown, Portadown, Ballymena, and Magherafelt. Neil Irwin, a Haemochromatosis UK employee, was diagnosed seven years ago and emphasizes the importance of early diagnosis for effective treatment.
Collette McKnight, a mother of three from rural County Down, was diagnosed in 2019. She initially attributed her symptoms to being busy with children, but later developed heart palpitations, leading to a confirmed diagnosis. She now manages her condition with therapeutic blood removal, which reduces iron levels and alleviates symptoms.
The 'Celtic Curse' refers to a gene mutation believed to have originated in the Celtic population of Europe, as evidenced by DNA analysis of ancient remains.
Haemochromatosis UK is organizing a touring photographic exhibition, 'We are Overloaded', featuring photographs of people living with haemochromatosis by Pulitzer Prize-winning photojournalist Cathal McNaughton. The exhibition will be open to the public at the Millennium Court in Portadown on January 19.
Finbar Polin, from Gilford, is featured in the exhibition and was diagnosed during the pandemic. He shares his story, emphasizing the mental impact of the diagnosis and the support gained from the charity and fellow patients.
Regarding screening, the Department of Health follows UK National Screening Committee (UK NSC) recommendations. However, Haemochromatosis UK believes that widespread testing is crucial to creating an accurate picture of the condition's prevalence in Northern Ireland, where up to one in 10 people may be at risk.
The charity has previously funded a campaign offering free self-test kits to thousands of households in Belfast, Carrickfergus, and Londonderry. The genetic testing kits typically cost around £130, but Haemochromatosis UK has secured funding through donations, including support from businessman James Hagan, whose close relative was recently diagnosed with genetic haemochromatosis.
