Celtic blood disease undiagnosed in many Irish is subject of new awareness campaign

An Irish company in London has begun on a year-long campaign to encourage people to get tested for hemochromatosis, a potentially deadly blood disease common among the Irish.

With as many as 22,000 Irish suffering undiagnosed from hemochromatosis, a potentially deadly blood disease caused by an overload of iron, an Irish company based in London has begun on a year-long campaign to promote awareness of the “Celtic Blood Disease.”

Hemochromatosis, which can only be uncovered with a proper blood test, is a genetic condition which causes people to absorb excessive amounts of dietary iron, leading in time to serious organ damage. The disease is especially prevalent among the Irish and other Celtic people.

One in 400 people in Europe has the chance to develop the condition, whereas in Ireland the chances of getting it are much higher, with one-fifth of people in Ireland carry the genes to develop the condition.

Toureen, a construction company owned and founded by Kerryman Denis Nolan in London, is now determined, however, to encourage Irish people to be tested, after realizing that many of their extended family could have been affected by this condition in the past.

Read more: 22,000 Irish suffer from undiagnosed Celtic blood disease

#Haemochromatosis can be asymptomatic for many years. When symptoms manifest, they can be general and affect several organ systems https://t.co/xbWwNJ5Iuk pic.twitter.com/1wW2VxwR7h

— NatureRevDisPrimers (@DiseasePrimers) April 6, 2018

“Denis became aware of how serious it could be and started talking to all the site teams about it,” Toureen Group Director Dan Nolan told the Irish Post.

“That prompted some of the guys to undertake the test and a couple came back with positive diagnoses.

"We are saying to our workforce and to the wider community that they need to be aware of the symptoms and to spread the message.

"We’re aware that men can be quite stoic - and particularly Irish men and so we’re encouraging them to go off and get tested where necessary.

“We’ve now tried to step it up, we’ve met with the Haemochromatosis Society and we’ve asked how we can help each other.”

Launching their campaign at the 2018 London St. Patrick’s Day parade, the Toureen Group now hope to raise funds for life-saving research as well as raising general awareness of the blood disease.

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“It appears the medical profession aren’t that familiar with it and have other priorities, so unless people from the Irish community take the lead and raise its prominence it’s likely most people are going to suffer this for the next 10-20 years,” Nolan added.

“We probably all have lost relatives prematurely to Haemochromatosis and yet none of us would have been aware.

"People had told me it was difficult to be diagnosed and I was surprised to find that was the case. I went to my doctor and I really had to petition quite hard to get the test - it is a constant battle.

“We’re telling our people to be very alert to it and to be steadfast when it comes to speaking to your doctor. If caught early enough it is treatable, the issue is if it’s not been detected in time.”

“It is very easily diagnosed with a blood test, and if it is picked up, the treatment is very simple,” the Irish Haemochromatosis Association has stated.

Off your game? #toomuchiron #ironoverload #hemochromatosis pic.twitter.com/Uh0pWtKfwy

— Cdn Hemochromatosis (@IronOutCanada) May 30, 2017

“You have blood removed, maybe once a month, until your iron levels become normal. You have to be monitored for the rest of your life, but you are fine. If it goes undiagnosed, it damages your vital organs because the iron is too strong.

“There are 22,000 people in Ireland with [the] disorder who have no idea, so we want to create an awareness.”

Hemochromatosis is caused by an iron build up in the body which can become toxic to organs. It can have serious effects on the heart and liver and cause diabetes and arthritis if left untreated. Symptoms often include fatigue, which can cause it to be confused with the condition which is its complete opposite; anemia, an iron deficiency in the body.

“Haemochromatosis, it’s an iron overload condition. If the metabolic mechanism in your body is working normally it actually prevents iron consumed in the diet entering the system,” explained the chair of The Haemochromatosis Society in the UK, Corrina Towers, whose grandfather was from Dublin and grandmother from Donegal. She was diagnosed with the blood disease herself after suffering for decades with stomach issues and fatigue.

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#Haemochromatosis leads to iron accumulation in parenchymal cells - more in our PrimeView https://t.co/Y3dOERtGCU pic.twitter.com/UMCsf6S7iR

— NatureRevDisPrimers (@DiseasePrimers) April 5, 2018

"The body very cleverly works out how much is needed and then literally puts the brakes on.

“If you have Haemochromatosis that mechanism in your body is not working properly.

“What’s actually happening, the iron that’s being over-absorbed, it begins to store in organs and tissues.

“It starts to cause things like arthritis problems in joints, it starts to cause stomach problems in the intestine, it starts to cause diabetes in the pancreas.

“It’s affecting all of these different organs in different ways and the real sad thing is that people present themselves to the doctors and quite often it’s being passed off as aging.”

More information on the disease can be found on The Haemochromatosis Association of Ireland website.

H/T: Irish Post