Cork man: ‘I’m someone who happens to have cystic fibrosis, but there’s more to me than that'

Ben McCarthy was diagnosed with cystic fibrosis (CF) at birth, and his parents were told he’d most likely not live past the age of 21.

“I’m 27 now, so I suppose you could say I’m living on borrowed time!” said the Youghal man, pointing out the self-deprecation in case it’s missed.

CF is an inherited condition that has no cure, and that affects multiple systems, including breathing, digestion and reproduction. Ireland has the highest rate of it per capita in the world, with more than 1,400 people here living with CF, and 33 new cases diagnosed each year.

Ben is sharing his experience of living with the condition to highlight the annual fundraiser for CF Ireland, 65 Roses Day, on Friday, April 10. The name stems from how young children often pronounce ‘cystic fibrosis’, and its objective is to raise vital funds for CF services and supports throughout the country.

“I’ve been faced with my mortality from a very young age, and in some ways, yes, it was like a ticking time bomb, but you get numb to it after a while – I don’t know what it’s like to live without it,” said Ben.

He’s had a lifetime of medications and restrictions, including regular hospital stays as a child, and now regular hospital appointments, restrictions to how he can work and more, but he says he doesn’t let the condition define him.

“I take upwards of 10 tablets every morning and again in the evening and I have CF-related diabetes so I need two types of insulin and also a nebuliser. But to look at me I’m like any other guy, so I’m lucky in that regard.

“Yes, CF is always there, but I’ve not known any different. I’ve a good quality of life, I’m living well with it and it hasn’t held me back. Of course I’m only human and sometimes it does get me down, but generally I’m optimistic.”

His dad Liam, also his carer, and chair of the Southern branch of Cystic Fibrosis Ireland, said Ben’s late teens were difficult as he approached his ‘deadline’ in life, but he said his son has a good outlook on life and is keen to do things lots of people might only consider when they’re retired.

Ben said: “I never put things on the back burner – sometimes to my detriment! If I get an idea I go the whole hog and jump straight in. If I want to do something I do it now – the reality is that I might not be around next year.”

That ‘can do’ attitude saw the father and son, who enjoy a deep friendship, embark on a trip to China last year and a CFI fundraising walk in Croatia.

Treatments have advanced considerably since Ben’s diagnosis, and he’s benefited from drugs such as Orkambi.

Thanks to multidisciplinary care and the introduction of such therapies, many people with CF are living well into adulthood. However, as people age, new challenges can emerge, including CF related diabetes, osteoporosis, and an increased risk of colorectal cancer.

“Another thing is that most of my teeth have cavities, I’ve had three root canals and I’ve a permanent crown because lots of my medication make my teeth very brittle,” said Ben.

Currently, CFI is investing in research to better understand these emerging issues and also provide essential targeted financial assistance through a range of grants that help ease the cost of living with CF as it can influence every aspect of a person’s life — from career choices to starting a family to securing a home.

Ben completed an engineering degree in Waterford – it took him seven years instead of the four due to his condition, and he now works part-time as a chauffeur. His medication regimen makes full-time employment difficult, which he describes as “very frustrating”. He lives with Liam and says CF would make getting a mortgage very challenging.

Liam added: “Every service CFI provides —whether it’s supporting families, funding hospital units, or advancing life-changing research - depends entirely on public generosity and support on 65 Roses Day directly impacts the lives of people living with cystic fibrosis across Ireland.”

Ben is living his life to the full, but he’s aware things can change quickly. He was hospitalised on his return from China last year with influenza.

“You can be fine one week, and in hospital the next week. Things can happen fast.”

His advice to a young person living with CF is to be actively involved in their care.

“Get comfortable asking questions. Also, meet other people with CF, even through online communities. You can have the best support at home and from your care team, but the only person who will properly understand what you’re going through is someone who has experienced it already.

“Peer support is important to know you’re not a single island in a storm.”

Liam added: “I would tell parents to take Dr Google with a pinch of salt. Also, I remember the advice I was given when Ben was younger was to take things one day at a time, to worry about him being sick when he’s sick, rather than worrying constantly, and just to let him live his life.”

Ben concluded: “I’m just someone who happens to have CF, but there’s much more to me than the condition.”

• People in Cork are being urged to help CFI meet its fundraising target of €300,000 on 65 Roses Day this Friday, April 10. Volunteers across the country will be selling purple roses to support fundraising, in Dunnes Stores branches, shopping centres, and other participating outlets.

See: www.65roses.ie.