World Haemochromatosis Awareness Week launched in Seapoint Beach in Co. Dublin this year. June 1-7th is the most important time of the year, when we urge everyone in Ireland to recognise the symptoms of the nation’s ‘Hidden Condition’, often called the ‘Celtic Gene’.
Sister and brother, Emilia and Teddy Eustace joined Alice Kelly, entrepreneur, baker, Tik Tok and YouTube sensation and author, Anna McCarthy record-breaking open sea swimmer and Brian Keegan, volunteer board member, Irish Haemochromatosis Association, who all have lived experience of haemochromatosis, to help raise awareness of Ireland’s most common genetic disorder.
AND we have the highest prevalence of haemochromatosis in the world, with around 1 in 5 people carrying the gene and approximately 1 in 83 are genetically predisposed to developing haemochromatosis. New research funded by Haemochromatosis UK and led by Professor Jim Wilson at the University of Edinburgh has identified clear genetic “hotspots” across Ireland and the UK with the highest concentrations of risk found in the north-west.
What is haemochromatosis? Haemochromatosis is a condition causes the body to absorb too much iron from food. Over time, excess iron can build up in vital organs including the liver, heart, pancreas and joints, potentially leading to irreversible damage if left untreated. Serious complications can include liver disease, heart problems, diabetes and joint damage. Despite how common it is, haemochromatosis is often missed because the early symptoms can be vague and easily mistaken for stress, ageing, general fatigue or other conditions.
Brian Keegan, who is passionate about raising awareness of the condition among younger generations, took the opportunity this week to remind people to get tested and if worried about any symptoms, to go to your GP and get checked.
Alice Kelly, was diagnosed with haemochromatosis at the age of 21 after years of unexplained symptoms. Alice is a great Youth Ambassador and says that being diagnosed after experiencing symptoms she could not explain in her teens, brought a huge relief.
Open water swimmer and long-standing Irish Haemochromatosis Association campaign supporter Anna McCarthy, who was diagnosed with haemochromatosis over 14 years ago, said that breaking two records and completing swims across the English Channel and the Strait of Gibraltar, absolutely hasn’t stopped her. Anna also swam in relay from Wales to Ireland, being the first female to complete this swim!
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