Clonakilty man Oliver O’Brien on his battle with cystic fibrosis since the age of five, and how the disease took his beloved brother at the age of just nine
‘PEOPLE suffer from cystic fibrosis. I don’t suffer, I live with it, and try not to let it take over.’
That’s the message from Kilbrittain man Oliver O’Brien, who was diagnosed with the genetic condition, aged just five.
However, the now 43-year-old Oliver is far from complacent and fully realises the importance of ongoing research into the condition which affects over 1,300 people in this country.
In fact, Ireland has the highest rates of cystic fibrosis in the world and some of the most severe types of the disease.
That’s why Oliver, who works in Clonakilty’s Irish Yogurt, is encouraging people to wear a Christmas jumper on December 14th, to work, or to anywhere at all, and donate €5 to Cystic Fibrosis Ireland.
Oliver was diagnosed with the condition as a toddler, and it’s a memory that’s stayed with him.
‘I just wasn’t thriving and had a persistent cough. One of the earlier ways to detect CF was to do a sweat test, as we have more salt in our sweat and tears. So I remember being in what was the regional hospital, running around the helipad area.’
His parents were prepared for the diagnosis as their eldest son Tony also had CF.
Tragically, Tony passed way from the condition aged nine in 1983. His other six siblings (three brothers, three sisters) don’t have the condition.
Oliver is grateful to be at the milder end of the spectrum, and has never spent a night in hospital as a result of CF and had a relatively normal childhood.
But it’s still something he is aware of every single day and following a strict daily medication regime which involves adding enzymes to food, vitamin supplements, antibiotics and taking Kalydeco every 12 hours.
He was selected to take part in a ground-breaking 2013 medical trial for Kalydeco, which is designed to target the gene he has an issue with and after a single week, he felt the benefits.
‘I would have been quite skinny and had a frequent cough, a sort of sub-conscious cough before this. But Kalydeco helped with that and I put on weight, and importantly held onto it.
‘I’m fitter now and my lung function has improved and I’ve more energy. I find I don’t get breathless when exercising.
‘For the past few years I’ve been very conscious of keeping myself fit and healthy. I do a bit or running and cycling and over the last few years I’ve also taken up spinning. Although that’s more to prepare for the annual ski trip I go on!’
He played underage and under 21 hurling and football for Kilbrittain, but his career on the field ended after breaking a collarbone when he was 21.
However, he’s still hugely involved in the club. He was secretary for seven years, chairman for two, PRO up until a few weeks ago, and is now treasurer.
He’s also a keen beekeeper, with currently 10 hives.
‘This summer was fantastic – between beekeeping and the GAA, I was run off my feet!’
Christmas Jumper Day 4 CF aims to raise awareness and funds to help provide support and services for people with cystic fibrosis nationally.
These include support grants for people with cystic fibrosis for exercise, transplant assessment, fertility treatment and counselling, as well as research and new healthcare facilities.
See www.cfireland.ie for more details, or contact Cystic Fibrosis Ireland on [email protected] for all enquiries.