Health alert as thousands of Irish living with undiagnosed genetic disorder that can ‘cause organ damage or death’
AROUND 20,000 people in Ireland are living with a life-threatening condition that can lead to "organ damage or even premature death".
Haemochromatosis, which is the most common genetic condition in the country, is a disorder where large amounts of iron are absorbed from a person's diet into vital organs.
Many people may not even know about the condition, but health bosses have warned that early diagnosis is "vital" as "iron overload" can cause serious damage if left untreated.
Ireland has the highest rates of this genetic disorder in the world, giving it the nickname 'Celtic Gene'.
One in five people in Ireland are carriers, equating to a massive 20 per cent of the population, and one in 83 people are "predisposed to develop" it.
Trinity College Dublin student Jessica Bryne, who was only recently diagnosed with the condition said she experienced chonic fatigue, diabetes and joint pain before being diagnosed with the condition.
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The student nurse, 19, said: "As a young person with haemochromatosis it is so important for everyone to be aware of what haemochromatosis is.
"It's so easy to overlook symptoms that can affect your studies and ability to enjoy life. My dad has haemochromatosis so I knew to get tested."
She added: "The positives are that I can now bring my understanding of managing a life-long condition and living a full life to my future nursing career.”
The Irish Haemochromatosis Association is urging members of the public to get checked for the condition.
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As part of a worldwide awareness campaign that will take place from June 1 until June 7, they said people should the understand the symptoms "in order to save lives".
Symptoms range from chronic tiredness and joint pain to abdominal pain, and irregular heartbeat.
Professor Suzanne Norris, Consultant in Hepatology and Gastroenterology at St. James’s Hospital said serious complications as a result of haemochromatosis can be avoided if a patient is diagnosed "as early as possible".
She said: "The work of the Irish Haemochromatosis Association has helped to increase awareness of Ireland's most common genetic disorder and educate the public on identifying symptoms and seeking treatment.”
Dr John Ryan, Consultant in Hepatology and Gastroenterology at Beaumont Hospital said Haemochromatosis is "more common in Ireland" than the rest of the world.
He explained: "When an individual has the affected gene, iron can build up in the body, potentially damaging the liver, heart and other organs.
LIGHT UP RED
SEVERAL City and County Councils across the country will support the campaign this year by joining the international initiative to 'light up red'.
Multiple iconic public buildings will be illuminated in red during World Haemochromatosis Awareness Week, which is taking place from June 1 to June 7.
Buildings being illuminated in red will include the Dublin Convention Centre, Fingal Town Hall, Cork City Hall, Limerick Council Offices, Sligo City Hall, Donegal Public Services Centre and Kerry County Council Buildings.
The public can support the vital work of the Irish Haemochromatosis Association, by making a donation to its work on the charity’s website www.haemochromatosis.ie or by donating via the Text to Donate service, Text ‘IRON’ to 50300 to donate €4.
Funds raised will be used to support the IHA Helpline and provide information and resources for patients and their families.
Alternatively, the IHA are also encouraging members of the Irish community to come together with friends and family and host a small coffee morning during World Haemochromatosis Week, in an effort to raise awareness and potentially, funds, to assist the charity in their work throughout the year.
"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.”
Volunteers and Ambassadors of the IHA such as GAA All Star David Beggy, former RTE presenter Mark Cagney, and former Eurovision songwriter winner Paul Harrington have all been diagnosed with the disease.
