Thousands of people in parts of Northern Ireland are being encouraged to take free tests for the disease, commonly known as the “Celtic Curse”.

Hemochromatosis is the most common genetic disease in Northern Ireland and is primarily found in people of Irish and Scottish ancestry.

This disorder means that a person is at high risk of absorbing too much iron, which can begin to damage other parts of the body.

Symptoms range widely, including chronic fatigue, joint pain, memory loss, abdominal pain, and skin disorders. If left untreated, it can lead to serious long-term health complications.

BBC News NI previously reported There are concerns that not enough people in Northern Ireland are being tested because of the cost..

The Ministry of Health’s current policy is to test patients for hereditary hemochromatosis if they develop symptoms.

But one charity said it wanted to gather more information about areas in Northern Ireland where people may be undiagnosed.

Hemochromatosis UK will be offering free genetic screening to up to 23,500 households in Irvingstown, Portadown, Ballymena and Magherafelt.

Neil Irwin works for Hemochromatosis UK and was diagnosed with hemochromatosis seven years ago.

He says early diagnosis is key to ensuring people receive effective treatment.

“In recent years we’ve had anecdotal evidence from areas like Mid-Ulster where people have contacted us to say there seems to be a high incidence of hemochromatosis in their area,” he said.

“However, due to the lack of official data, we are trying to fill in some of the gaps in Northern Ireland where people have not been tested to date, to get a better picture of the spread of this disease.”

Colette McKnight is a mother of three who lives in rural County Down.

She was diagnosed with hemochromatosis in 2019.

“He may have been extremely tired and in pain, but he would have chalked it up to being busy with things like taking care of his children,” she said.

“But then I started having heart palpitations and realized something was wrong.”

She added: “When the tests confirmed hemochromatosis, I had no idea what it was.

“Every day is different. Some days I have joint pain, some days I have breathing problems, and I have to constantly fight intense fatigue, which is very difficult.”

She is currently undergoing therapeutic blood withdrawal treatment to lower her iron levels and alleviate the symptoms caused by her condition.

The genetic mutations that cause most forms of hereditary hemochromatosis are thought to have originated in the Celts of Europe.

DNA analysis of the genomes of Bronze Age farmers on Rathlin Island, off the coast of County Antrim, shows that it was already established by that time.

Even earlier, the remains of a Neolithic woman discovered in Ballinahatty, near Belfast, showed she had another mutation. It is also associated with an increased risk of disability.

As part of its latest screening campaign, Hemochromatosis UK is hosting a traveling photography exhibition in Northern Ireland.

The exhibition ‘We are Overloaded’ opens to the public on January 19th at Millennium Court, Portadown.

We feature photos of people living with hemochromatosis. Cathal McNaughton, Pulitzer Prize-winning photojournalist.

Finbar Pollin, from Guildford, whose work is featured in the exhibition, was diagnosed with hemochromatosis during the pandemic.

He told BBC News NI: “I had never heard of the Celtic curse until I was diagnosed.

“It’s scary at first because it affects me mentally, I don’t know what’s going to happen, but getting involved in charity work and meeting other people has really helped me.

“That’s what I think is really powerful about this exhibition: each photo is a person with a story to tell.”

On the issue of screening, the Department of Health said it was following the advice of the UK National Screening Committee (UKNSC).

In its advisory on hemochromatosis, the UK NSC said: “There is limited evidence about whether treatment is more effective in people without symptoms compared to people with symptoms.”

However, Hemochromatosis UK believes it is important to know as accurately as possible how many people are living with the condition.

Previous research by the charity suggests that one in 10 people in Northern Ireland are at risk of hereditary hemochromatosis.

The charity previously ran a campaign to fund and provide free self-testing kits to thousands of households in Belfast, Carrickfergus and Londonderry.

Hemochromatosis UK genetic test kits usually cost around £130.

The latest kit being rolled out by Hemochromatosis UK has been purchased with donations and funds received by the charity.

Businessman James Hagan, founder of Hagan Homes, is one of the donors.

He said: “Someone very close to me was recently diagnosed with hereditary hemochromatosis despite having no symptoms.

“Their experience highlights exactly why this campaign is so important. Most people affected have no warning signs, but if symptoms go undetected, the potential consequences can be very serious.”

Hemochromatosis UK has announced that households in affected postcodes will receive information about hereditary hemochromatosis in the coming weeks and months.

This package provides free genetic testing and counseling to help you understand your results.