Ireland's "Hidden Condition": What Cork People Need to Know

The Irish Haemochromatosis Association (IHA) is urging the public to recognise the symptoms of haemochromatosis and seek testing earlier, ahead of World Haemochromatosis Awareness Week, which runs from 1st to 7th June 2026.

Haemochromatosis, often referred to as the "Celtic Gene" condition, is Ireland's most common genetic condition. Around 1 in 5 people in Ireland carry the gene linked to iron overload, with approximately 1 in 83 genetically predisposed to developing the condition. New research funded by Haemochromatosis UK and led by Professor Jim Wilson at the University of Edinburgh has identified genetic "hotspots" across Ireland, with the highest concentrations of risk found in the north-west.

The condition causes the body to absorb too much iron from food. Over time, excess iron can accumulate 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 its prevalence, haemochromatosis is frequently missed. Early symptoms such as persistent tiredness, brain fog, abdominal discomfort and joint pain, particularly in the knuckles, are vague and easily mistaken for stress, ageing or general fatigue. The IHA is urging anyone experiencing symptoms to speak with their GP about screening. Initial screening involves a simple iron panel blood test; if Serum Ferritin or Transferrin Saturation (TSAT) levels are raised, a genetic blood test is then recommended.

Professor John Ryan, Consultant Hepatologist at Beaumont Hospital and Chair of the Irish Liver Foundation, said:

"The key message is that once haemochromatosis is diagnosed, it is highly treatable. It may be frequently missed because early symptoms are so non-specific, but we have the tools to diagnose this early and prevent complications. Along with the European Iron Club, I'm delighted to be hosting a conference in Trinity College in June, bringing together a truly outstanding line-up of speakers and international experts who are advancing vital research in haemochromatosis."

Professor Suzanne Norris, Consultant in Hepatology and Gastroenterology at St. James's Hospital, added:

"Early diagnosis of haemochromatosis is vital, which is why serious complications as a result of haemochromatosis can be avoided if a patient is diagnosed as early as possible. 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."

The campaign also highlights the lived experience of those diagnosed with the condition. Brian Keegan, voluntary board member of the IHA, who lives with haemochromatosis, said:

"As someone living with haemochromatosis and as an ambassador for raising awareness, I'm passionate about speaking to younger generations about the condition. Too often, people don't realise that some of the non-specific symptoms could point to something more serious, or they wait until complications develop before seeking help. A simple blood test can make a huge difference. If you have symptoms or a family history of haemochromatosis, don't ignore it, speak to your GP and get tested."

Irish baker, entrepreneur and author Alice Kelly, who was diagnosed at the age of 21 after years of unexplained symptoms, said:

"For years, I was constantly exhausted and dealing with symptoms I couldn't explain. My fingers ached, I had stomach pains, and I kept being told everything was normal. I started to believe I was just lazy or overreacting, even though I didn't feel that way at all. When I finally got my diagnosis, I felt a huge sense of relief. It explained everything I had been experiencing for years, and it finally gave me a path forward. Looking back, it was the missing link in all my symptoms."

Open water swimmer Anna McCarthy, who was diagnosed with haemochromatosis over 14 years ago, added:

"I was diagnosed after a routine blood test showed my iron levels were extremely high. At the time, I didn't really understand what haemochromatosis was, but I quickly learned how serious it could have been if it hadn't been picked up. I had around 40 pints of blood taken to bring my levels back to normal, and now I just manage it through regular blood donation. I've since broke two records and completed swims across the English Channel and the Strait of Gibraltar, so it absolutely hasn't stopped me. I also swam in relay from Wales to Ireland, being the first female to complete this swim! If you have symptoms or a family history, just get checked. Early diagnosis changes everything."

The IHA is also partnering with the HSE NW nurse education and training team and the Irish General Practice Nurses Educational Association to deliver a pilot venesection training programme for nurses in the community, with the aim of making treatment more accessible in community settings.

When diagnosed early, haemochromatosis is highly manageable. Treatment typically involves regular venesection, the removal of blood in a procedure similar to blood donation, which helps reduce iron levels and prevent long-term complications.

For further information or support, visit www.haemochromatosis.ie.