Life & Style

The undiagnosed Celtic blood disease affecting 22,000 Irish people

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ANTHONY GALLAGHER was born on Merseyside in 1954 to second generation Irish Catholic parents.

He first realised something wasn't right with his health in 2000 when his hands became tender to touch, which he put down to rheumatoid arthritis.

But his well-being continued to deteriorate and it wasn't until 2014 after a routine blood test that he was eventually diagnosed with Haemochromatosis - a Celtic blood disease that thousands of Irish people are unaware they have.

It's estimated that as many as 22,000 Irish people could be suffering from this potentially fatal condition known as the Celtic Curse.

A fifth of people carry the gene in Ireland where the chances of contracting the condition are 1-in-83 compared to around 1-in -400 in Europe.

'Without doubt, increased awareness would most likely have resulted in an earlier diagnosis for myself and my siblings," said Anthony, whose father died aged 54 from symptoms similar to those he has experienced.

Here is his story...

I FIRST became aware that I had a problem probably somewhere around the year 2000 when my hands became tender to the touch.

I put this down to early onset arthritis as I had been carrying heavy sample bags around the world for a number of years related to my job.

However things took a turn for the worse in April 2005 when whilst out running - a hobby that had taken me through several marathons including two Londons - my knees blew up like footballs and I was forced to hobble home.

Three years later in March of 2005, I was at long last referred to my local hospital (at that time in Yorkshire) by my GP, and blood tests suggested that I had Rheumatoid Arthritis.

I was subsequently treated with a series of three disease modifying drugs and steroidal injections, all of which had a detrimental effect on my well-being.

Things would have continued so, but for a move away from Yorkshire in 2009 to the West Midlands where I came under the care of Rheumatology at the Queen Elizabeth Hospital.

Anthony Gallagher says he father died aged 54 with similar symptoms to his.

By this stage, I had been labelled Rheumatoid Arthritis so things progressed as before, until a random blood test with my GP in October 2013 for an unconnected issue revealed a stratospheric ferritin (iron) level in my bloodstream.

A referral back to the QE and further blood tests eventually led to a diagnosis of Haemochromatosis in February of 2014.

Subsequent venesections (bleeds) 34 to date, have reduced my ferritin (iron) to a safe level, and I am now no longer considered to be at risk.

I was fortunate as the high ferritin level can often trigger liver and heart issues, but my problems appear to have been restricted to those of an arthritic nature.

However my father died of unexplained complications aged 54 years with similar symptoms to my own, and one of my sisters has been diagnosed with the condition as a result of my diagnosis, and another has been found to be a carrier.

Without doubt, increased awareness would most likely have resulted in an earlier diagnosis for myself and my siblings.

Post diagnosis, I have discovered that several members of the Irish Catholic community with whom I grew up in Liverpool have the same condition as myself.

In an effort to help raise awareness of Haemochromatosis, I have been campaigning my Mustang in hillclimbs and sprints in Britain this year, and this has created much interest.

What is Genetic Haemochromatosis?

Are you suffering from one or any combination of the following?

Fatigue, arthritis, diabetes, liver problems, bronzed skin, abdominal pain, heart irregularities.

Have you considered that too much iron could be a possible cause?

Genetic Haemochromatosis is an iron overload condition in which the body absorbs more iron than is needed and is unable to process the excess.

The iron builds up over time and is deposited in vital organs such as the liver, heart, pancreas and joints causing damage and various related conditions.

It is one of the most common yet under-diagnosed genetic conditions in Britain.

Diagnosis is simple and inexpensive

A blood test can identify high iron levels.

This is monitored over a couple of months and if the ferritin levels remain elevated then a genetic blood test is carried out to confirm the diagnosis.

What's the treatment?

Venesections (or blood letting) is carried out on a regular basis (weekly or fortnightly to begin with depending on your levels).

Once the iron is down to a safe level (this is called the maintenance stage) the venesections will then be much less frequent (this is dependent on how quickly each individual loads iron).

The cost of late diagnosis can be financially high (hip replacements, liver transplants etc) but more importantly the cost to the individual’s quality of life can be debilitating.