Leitrim man on living with genetic condition - I'd have to sit down for 20 minutes mowing the lawn

A Leitrim man who was diagnosed with Haemochromatosis spoke to the Leitrim Observer this week about how he discovered he had the condition and how he was subsequently successfully treated at Sligo Hospital.

He is now aiming to raise awareness of the condition and urging anyone who thinks they may be displaying symptoms to go and get checked by their GP.

Haemochromatosis is a genetic disorder where large amounts of iron are absorbed causing ‘iron overload’.

It is Ireland’s most common genetic disorder, with an estimated 20,000 people across the country living undiagnosed.

The condition, known as the ‘Celtic Gene’ due to Ireland having the highest rates globally, affects one in 83 people and sees one in five carrying the gene.

This year, the Irish Haemochromatosis Association (IHA) launched a major awareness drive during World Haemochromatosis Awareness Week which took place earlier this month

Speaking to the Leitrim Observer, William Garvey from Jamestown outside Carrick-on-Shannon said that he received a diagnosis in 2023.

He spoke of how he struggled with extreme fatigue and found it hard to adjust to “not being able to do things for a while. I’d try to clean the house or mow the lawn and I’d have to stop halfway through and sit down on the lawn for twenty minutes. I play a bit of golf and just playing a nine hole round of golf was exhausting.”

He said that during the pandemic, he had problems with his esophagus and found it hard to eat and drink however this was due to an unrelated condition caused by acid reflux. “I had actually thought it was anxiety-related. The job I was doing at the time was quite intense and with everything going on with the pandemic, I just thought that’s what it was.”

However, luckily a friend at work pushed him to go and see a GP. “My profession is in medical affairs in the pharmaceutical industry, so I’ve a reasonable understanding of various conditions but I just kept putting it off and saying that I would go to the doctor the following week.”

After going to his GP, William had a number of blood tests and an endoscope as well as X-Rays. The blood test showed that he was suspected of having Haemochromatosis. He underwent genetic testing and the result was positive. “My transferrin saturation levels were way too high; they were at nearly 1,100. My GP referred me to the Department Of Haematology at Sligo General Hospital.”

There he underwent a venesection, also known as phlebotomy or bloodletting, which is a medical procedure where blood is drawn from a patient.

The treatment lasted from October 2023 to June 2024 and he would receive treatment every two weeks.

He said that working in the pharmaceutical industry, “you’re talking about healthcare systems and patient pathways but not seeing things first-hand. But sitting there and getting treated myself gave me a very different view. There were people there with life-threatening illnesses so it really made me feel very empathetic towards those going through that.”

After a couple of treatments, William began to feel more energetic and less fatigued. “I feel fine now. It’s nearly a year since I was there last and I’m just awaiting a check-up. I may have to get one or two treatments a year depending on the outcome of that.”

William said that for him to have inherited the condition “both of my parents would have had to be carriers of the gene. I know my father has two cousins.”

He said that he has had many people tell him that members of their family have the condition. “It’s worth getting tested to see if you have the gene and could pass it on to future generations.”

Now William watches his diet in terms of how much red meat he eats and carefully reads the ingredients on packaged foods and multivitamins to ensure he is not ingesting too much iron. “I feel so much better.”

The international ‘Light Up Red’ initiative took place this month to raise awareness of the condition with iconic buildings including Dublin’s Mansion House, Limerick Council Offices and Sligo City Hall illuminated in red to raise awareness.

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Leitrim man on living with genetic condition – I’d have to sit down for 20 minutes mowing the lawn

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