5 days ago
Sisters raise awareness for haemochromatosis after sudden death of father
Two sisters ran the VHI women's mini marathon on Sunday to raise awareness for haemochromatosis after their father suddenly passed away due to a late diagnosis.
Tara Nolan, 27, was just 14 years old when her dad Arthur died in 2012 just weeks after being diagnosed with the disease. Also known as the 'Celtic Gene', as Ireland has the highest rates of haemochromatosis in the world, it's estimated that 20,000 people in this country are living undiagnosed.
It is a genetic disorder where large amounts of iron are absorbed from the diet into vital organs. While it is incurable it is very treatable, however, if it goes undetected it can lead to fatal consequences.
Speaking on World Haemochromatosis Awareness Week which kicked off on June 1, Tara encourages everyone to get tested after her father sadly passed due to late diagnosis.
She told The Irish Mirror: "He was in the Philippines back in 2012 for about five or six weeks, and he got a bit sick over there, so they brought him to the hospital, and they didn't really know too much themselves.
"They just knew there was something wrong. He came home two days later or something and then he went straight to the hospital here."
Arthur's sisters mentioned that their mother had the haemochromatosis gene and after tests doctors discovered he had it. Despite previously suffering from gallstones and having numerous blood tests, it wasn't caught before this.
Unfortunately, it was found that Arthur had liver cancer and it was too late to treat. Uncontrolled iron buildup in the body can lead to cirrhosis and liver cancer, and can potentially cause pancreatic cancer.
Tara continued: "He just got really sick, it had gotten so bad they couldn't do the surgery or anything like that. So, he went in his own time about two weeks later.
"I was only 14 at the time so I was quite young when this happened. It was very sudden and it was weird because that was the first time he was kind of away from us for that long." After their father passed, Tara and her three siblings got tested for haemochromatosis.
While Tara is a carrier of the gene she hasn't developed the condition. Her sister Niamh, who she ran the mini marathon with, found out she does have it.
However, she is being treated and is living a happy and healthy life. The Irish Haemochromatosis Association is trying to raise awareness for the condition, as once it is identified it is very treatable.
Symptoms of haemochromatosis can range from chronic tiredness and joint pain to abdominal pain, irregular heartbeat and liver problems. Former Meath GAA player and chair of the Irish Irish Haemochromatosis Association David Beggy, who lives with the condition, encourages everyone to get checked.
This can be done by consulting with a GP who can carry out a blood test alongside an iron panel to detect high levels of iron in the blood. He said: "Haemochromatosis is more common in Ireland than anywhere else in the world, that's why it is vital that no Irish person should go undiagnosed.
"As someone living with the condition, I can personally vouch for how manageable it is when caught early and treated and it no longer troubles me. One in five people carry the gene, and one in 83 are at risk of developing it.
"I'd strongly encourage anyone with a family history of haemochromatosis, or anyone experiencing related symptoms, to get checked."
