{"id":391157,"date":"2026-04-10T06:13:11","date_gmt":"2026-04-10T06:13:11","guid":{"rendered":"https:\/\/www.newsbeep.com\/ie\/391157\/"},"modified":"2026-04-10T06:13:11","modified_gmt":"2026-04-10T06:13:11","slug":"im-just-someone-who-happens-to-have-cystic-fibrosis-but-theres-more-to-me-than-that","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/ie\/391157\/","title":{"rendered":"\u2018I\u2019m just someone who happens to have cystic fibrosis, but there\u2019s more to me than that’"},"content":{"rendered":"

Ben McCarthy was diagnosed with cystic fibrosis (CF) at birth, and his parents were told he\u2019d most likely not live past the age of 21.<\/p>\n

\u201cI\u2019m 27 now, so I suppose you could say I\u2019m living on borrowed time!\u201d said the Youghal man, pointing out the self-deprecation in case it\u2019s missed.<\/p>\n

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.<\/p>\n

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 \u2018cystic fibrosis\u2019, and its objective is to raise vital funds for CF services and supports throughout the country.<\/p>\n

\u201cI\u2019ve 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 \u2013 I don\u2019t know what it\u2019s like to live without it,\u201d said Ben.<\/p>\n

\"BenBen and Liam on their fundraising walk in Croatia<\/p>\n

He\u2019s 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\u2019t let the condition define him.<\/p>\n

\u201cI 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\u2019m like any other guy, so I\u2019m lucky in that regard.<\/p>\n

\n \u201cYes, CF is always there, but I\u2019ve not known any different. I\u2019ve a good quality of life, I\u2019m living well with it and it hasn\u2019t held me back. Of course I\u2019m only human and sometimes it does get me down, but generally I\u2019m optimistic.\u201d\n <\/p>\n

His dad Liam, also his carer, and chair of the Southern branch of Cystic Fibrosis Ireland, said Ben\u2019s late teens were difficult as he approached his \u2018deadline\u2019 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\u2019re retired.<\/p>\n

Ben said: \u201cI never put things on the back burner \u2013 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 \u2013 the reality is that I might not be around next year.\u201d<\/p>\n

That \u2018can do\u2019 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.<\/p>\n

Treatments have advanced considerably since Ben\u2019s diagnosis, and he\u2019s benefited from drugs such as Orkambi.<\/p>\n

\"LiamLiam and Ben McCarthy are calling for support for 65 Roses Day 2026.<\/p>\n

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.<\/p>\n

\u201cAnother thing is that most of my teeth have cavities, I\u2019ve had three root canals and I\u2019ve a permanent crown because lots of my medication make my teeth very brittle,\u201d said Ben.<\/p>\n

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\u2019s life \u2014 from career choices to starting a family to securing a home.<\/p>\n

Ben completed an engineering degree in Waterford \u2013 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 \u201cvery frustrating\u201d. He lives with Liam and says CF would make getting a mortgage very challenging.<\/p>\n

Liam added: \u201cEvery service CFI provides \u2014whether it\u2019s 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.\u201d<\/p>\n

Ben is living his life to the full, but he\u2019s aware things can change quickly. He was hospitalised on his return from China last year with influenza.<\/p>\n

\n \u201cYou can be fine one week, and in hospital the next week. Things can happen fast.\u201d\n <\/p>\n

His advice to a young person living with CF is to be actively involved in their care.<\/p>\n

\u201cGet 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\u2019re going through is someone who has experienced it already.<\/p>\n

\u201cPeer support is important to know you\u2019re not a single island in a storm.\u201d<\/p>\n

Liam added: \u201cI 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\u2019s sick, rather than worrying constantly, and just to let him live his life.\u201d<\/p>\n

Ben concluded: \u201cI\u2019m just someone who happens to have CF, but there\u2019s much more to me than the condition.\u201d<\/p>\n

People in Cork are being urged to help CFI meet its fundraising target of \u20ac300,000 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.<\/p>\n

See: www.65roses.ie<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"Ben McCarthy was diagnosed with cystic fibrosis (CF) at birth, and his parents were told he\u2019d most likely…\n","protected":false},"author":2,"featured_media":391158,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[103,61,60],"class_list":{"0":"post-391157","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-health","9":"tag-ie","10":"tag-ireland"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/391157","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/comments?post=391157"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/posts\/391157\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media\/391158"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/media?parent=391157"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/categories?post=391157"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/ie\/wp-json\/wp\/v2\/tags?post=391157"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}