The Irish Haemochromatosis Association is calling on the government for a national strategy for haemochromatosis, Ireland’s most common genetic condition.
The call coincides with World Haemochromatosis Awareness Week, this week. Haemochromatosis is more common in Ireland than anywhere else in the world, giving it the nickname ‘the Celtic Gene’.
One in 83 people in Ireland are at risk of developing haemochromatosis, or ‘iron overload’, but the association has said it remains one of the lesser-known conditions among the Irish population.
Recent research has also shown that up to one in 10 people in Northern Ireland are at risk of having genetic haemochromatosis.
Early diagnosis is vital and, if left untreated, iron overload can lead to organ damage or even premature death. The Irish Haemochromatosis Association estimates there are at least 20,000 undiagnosed cases of haemochromatosis in Ireland.
The association is also urging the Irish public to get checked for the condition, which has symptoms that range from chronic tiredness and joint pain, to abdominal pain and sexual dysfunction.
This year will see several city and county councils supporting the campaign and joining the wider international initiative to light up several iconic public buildings in red during World Haemochromatosis Awareness Week. These will include the Dublin Convention Centre and Fingal Town Hall.
“As someone who has seen family members diagnosed with haemochromatosis, I want to help highlight just how important early detection really is. If I can help even one person recognise the symptoms and inspire them to go and get checked, I will feel like I have helped make a small difference,” said ambassador and former Ireland Rugby international Tomás O’Leary.
Dr Maurice Manning, who lives with haemochromatosis and is current Chair of the Irish Haemochromatosis Association, added: “We are calling for a National Strategy for haemochromatosis to be developed in Ireland.
“There should also be equity of access to treatment for everyone in the country. Haemochromatosis, once diagnosed can be successfully treated and patients go on to live their lives to the full, without any impact.”
“Haemochromatosis is an inherited condition, where the body cannot switch off iron absorption and iron build up leads to life-threatening organ damage,” said Dr John Ryan, Consultant in Hepatology and Gastroenterology at Beaumont Hospital.
“If picked up early enough it is entirely treatable, and individuals may also donate blood through the Irish Blood transfusion clinics, which is then put to good use.”
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