Cork councillor urges haemochromatosis test to prevent misery of 'Celtic curse'

A father and son living with a genetic iron-overload condition which left untreated can lead to premature death have called for a national screening program.
Cork councillor urges haemochromatosis test to prevent misery of 'Celtic curse'
Fine Gael councillor Damien Boylan, left, with John Henchion and Kate Durrant at the Blarmey Person of the Year Awards at the Castle Hotel, Blarney, last January. Pic: Gavin Browne

A father and son living with a genetic iron-overload condition which left untreated can lead to premature death have called for a national screening program.

Fine Gael councillor Damien Boylan, and his father Tony, from Blarney, in Cork, said a simple blood test for haemochromatosis, nicknamed the ‘Celtic curse’, can prevent a life of misery.

Damian, who was elected to Cork City Council last year, said he will use his role as a local politician to call on government to implement a national screening program for haemochromatosis.

“A simple blood test to check iron levels can pinpoint the condition and the treatment is simple and drug-free,” he said.

“There are very few conditions where treatment is so simple and effective. It’s not something that dictates your life in any huge way but it can lead to serious illness if you don’t get treatment.”

Tony had a difficult time before his diagnosis, with one doctor labelling him a heavy drinker because of elevated liver function.

He went a month without alcohol before returning for a medical check, which showed no improvement in his liver function.

Damian said his father was “effectively thrown out of the surgery with a tick in his ear” and told not to waste the doctor’s time again.

Thankfully, Tony was subsequently diagnosed with haemochromatosis and received the proper treatment.

Haemochromatosis, or ‘iron overload’, is Ireland’s most common genetic condition and is more common in Ireland than anywhere else in the world.

Iron builds up slowly so symptoms may not appear until people are in their 30s or 40s. The symptoms include unexplained weakness or fatigue, abdominal pain, diminished sex drive or impotence, arthritis, particularly if it occurs in the first and second knuckles or in the ankles, and diabetes, as well as liver disorders, and discolouration of or bronzing of skin.

Cllr Damian Boylan (right) and his dad, Tony who is cocooning, who are both warning about the need to be tested for hemochromatosis, the hereditary blood disorder. pictured in Blarney. Picture: Eddie O'Hare
Cllr Damian Boylan (right) and his dad, Tony who is cocooning, who are both warning about the need to be tested for hemochromatosis, the hereditary blood disorder. pictured in Blarney. Picture: Eddie O'Hare

The main treatment is venesection, where a unit of blood is taken from the patient every week or two until their iron levels are reduced to 50-100 ug/litre. After that it is a question of maintenance and regular checks.

“I’ve often said that if you were to choose a condition from a list, you would choose haemochromatosis," Damian said.

“Venesection happens once every six months and that maintains my ferritin levels at around 40, which is quite good.

“Over the years I have gone from someone who hated needles to someone who isn’t bothered in the least.

“At his worst, my dad’s levels were up to 4,500. My mother’s when tested were 600. For my brothers Jason and Julian and myself, there was no escape."

However, thanks to the treatment and ongoing medical care, Damian said haemochromatosis has little or no effect on his life.

The Irish Haemochromatosis Association’s (IHA) awareness week runs this week.

See haemochromatosis-ir.com or Text ‘IRON’ to 50300

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