The most startling discovery was life expectancy; it was a different time and the figure for people living with Cystic Fibrosis was just 37.
Almost 2,000 people on the island of Ireland have the condition and Eric Hanley was 10 when he was diagnosed. Over the next few years, he and his family learned more about his rare genetic disorder.
He went on to graduate with a Master’s in Performance Psychology from University of Edinburgh and also found golf, the sport which gives him the freedom to get valuable exercise and play in the fresh air.
There have been setbacks along the way and adverse reactions to medical trials, that in one instance led to a fall in hospital and nine broken vertebrae.
Now 27, Hanley always retains the positive outlook on his life. Last week he celebrated his 10,000th day alive, as he continues to work hard on his mindset and even harder to stay healthy. He will not be defined by CF.
“I have to do a lot of work to be healthy,” said Hanley.
“I have to do nebulisers, physio, go to a lot of hospital appointments. I have to go on runs, I should have been doing it a lot sooner, but I recently joined the gym.
“A lot of effort goes into being healthy, if you don’t put in the effort, it’s very easy to become sick. Then when you are sick it’s very easy to be sick because you get the sympathy, you got days off school, got out of exams, got extra points.
“I don’t want to be sick, I didn’t want to be known as the sick kid, I want to do more than that. I want to golf, work in golf, work in sports.
“I want to see the world, do all those things.”
Hanley is the High Performance and Competitions Coordinator with Golf Ireland and is also a sport and performance psychologist working with teams and athletes looking to reach their potential.
He hails from Leighlinbridge in Carlow and attended St Mary’s Academy CBS before he studied a Bachelor of Arts degree at UCD, graduating in 2020.
He loves sport and it was during one of his extended stays in hospital that he began to explore the workings of the famed sports psychologist and golf coach, Bob Rotella, when he read ‘Your 15th Club’.
“I was sick but still wanted to find a way to get better at golf without being able to play, so I started reading,” said Hanley.
“My dad introduced me to them in my mid-teens and from there the interest in sports psychology and psychology in general, grew.”
Hanley opted for psychology rather than architecture on his CAO application, a decision which changed the course of his life. The battles with his health continued but he persevered and never let any grim prognosis get the better of him.
“Having illnesses of any kind, or being in hospitals with any type of ailments, it’s quite a funny place. Your family, friends, they’ll come in and think you’re having the worst day imaginable but more often than not, I’m having a great time,” said Hanley.
“I’ve never known anything different than my life. Sometimes people look at me with sympathy or sadness and I never want my story to be that because it’s not been that for me. Some of the best moments in my life, I’ve been in hospitals, and some of the worst.
“The worst moment I’ve ever had in the hospital was watching Brazil lose 7-1 to Germany in the World Cup. It was nothing to do with my health. I sat in the hospital crying because Brazil lost a match.”
Hanley continued to excel on the golf course and in his studies, while maintaining a social life during his college years.
The arrival of Covid-19 on these shores presented the unknown for anyone with CF but he never let that affect his quality of life.
“I was finishing my undergrad and got offered a place in Edinburgh,” said Hanley.
“My doctors and family told me not to go, to wait for Covid to die down because it was dangerous.
“It’s very easy to sit in fear and not do things, I’d much rather cross the bridge of trouble when I get to it and see what happens.
“I went to Edinburgh during the pandemic with Cystic Fibrosis and it was one of the best decisions I’ve ever made.”
Advancements in technology mean a person with CF can live decades longer, while medical breakthroughs continue to further that cause with new drugs emerging on the market over the years.
The early approval and rollout of Kaftrio was a huge step in the right direction for Ireland in 2019. Hanley’s doctors urged him to try the CF drug, and although he had an allergic reaction ten days after the first attempt, he tried again one month later.
This time it was in an instant and he was in hospital when he collapsed and hit his head.
“My whole body broke out that night and I remember coming to, I was on the ground in the bathroom and the emergency cord was dangling above my head,” said Hanley.
“I had no clue what happened and reached up and pulled the cord. The nurses came and got me into a bed, and over the coming days we’d done scans, X-rays and CTs.
“I saw physios and specialists, spent the next three or four months in a back brace from the middle of my chest to my neck. I crushed my spine like an accordion.
“I hit my head off either the toilet or wall, crushed my spine downwards and spent the best part of 2022 in a back brace.”
Hanley had finished as an Assistant Golf Professional at Rathfarnham Golf Club prior to that and the fall meant he had to take time away from the game he loved.
But he finished his studies and went to work with SmartStream Technologies before an opportunity arose with Golf Ireland, where he joined up as a High Performance and Competitions Administrator in May 2024.
In February, he attended the TARS (Tournament Administrators and Referees Seminar) run by the R&A, the Level 3 qualification for refereeing. He is in the process of accumulating 120 hours in action over the next three years.
This week he would have been refereeing in Portmarnock for the Carey Cup, where Ireland face the Metropolitan Golf Association, however instead he has another check-up, his doctors will access his lung function among other things.
Hanley still has big plans in his future and wants others to know that they too can have a life full of opportunity, even with a CF diagnosis.
“I’ve always been sick. I was born in one hospital and instantly rushed in an ambulance to a different hospital,” said Hanley.
“There’s always been something up but it wasn’t until I was ten that we actually put the words Cystic Fibrosis on it. The earliest memory was when I was 12 or 13, and the hospital gave me a bunch of paperwork, horror stories, the life expectancy number jumping out.
“I used to think, oh, that’s not too bad, it’s a long way away. As I get older, it gets closer but I know technology, medicine, all of that has come a long way.
“My nanny always tells me health is your wealth and she’s right, but in my eyes it’s not your health that matters, it’s what you do with it.
“The days that I feel good and can do something, I try and do it. If that’s going for a game of golf, for a hike up the mountain or walk by the river. If I can do something, I try and do it.
“CF has always been a reminder of how lucky I am, which sounds completely ironic because it’s the reason other people think I’m unlucky. But it’s a reminder I’m very lucky that I get to do anything.
“There’s people with CF that had lung transplants younger than I am, there’s a hell of a lot who have not lived as old as I am, I try and see the potential and make the most of it.
“I don’t think you need to feel sorry for people who are sick. My family and friends probably do but I always tell them they don’t need to.”
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