‘The cost of breathing’ exhibition highlights challenges of cystic fibrosis

‘The Cost of Breathing’ photography exhibition was opened at the Cystic Fibrosis Ireland (CFI) Conference on 7 February, 2026, by CFI in collaboration with photographer Trevor O’Donoghue. The exhibition marks the beginning of a national tour aiming to highlight the societal and economic challenges that many people living with CF face, despite advancements in recent years. The exhibition, which was first shown online in October, 2025, will be available for viewing in multiple locations around Ireland until June, 2026.

Killarney-based photographer Mr O’Donoghue, of Radharc Perspective and Life Coaching, lives with CF. He became involved in the project to strengthen awareness of the realities of living with the condition, which affects more than 1,400 people across the country. Ireland has the highest rate of CF per capita in the world, as well as some of the most severe types. Approximately 34 new cases of the condition are diagnosed each year (one in every 2,300 babies). Data from the CF Registry of Ireland show that the median predicted age of survival for a person with the disease born in Ireland today is 62. Commenting, Mr O’Donoghue also highlighted that Ireland is “no stranger” to the story of CF, and described the true burden of living with the condition.

“The journey from being a childhood illness to the positivity that we see now has been paved with many great advocacy and awareness initiatives. However, this exhibition tells an untold part of that story and asks what it feels like to survive in a system where everything has a cost, even the breath in your lungs.

“I created seven pieces which were first shown at the online exhibition in October. Each one is embedded in a different emotion, illustrated with a different colour, and highlights the very real issues of life with CF. These are based on first-hand, lived experience, but also second- and third-hand experiences, through discussions with my partner, who also lives with an illness, and others in the CF community in Ireland.”

Research conducted by CFI in 2025 shows the significant financial burden many people with CF and their families regularly face. Key findings included:

• Almost half of people with CF are struggling to meet their monthly bills
• 28 per cent of people with CF are unable to work due to the disease
• One-third of people with CF in full-time employment experience enforced deprivation
• 64 per cent of people with CF receiving disability allowance experience enforced deprivation.

CFI is highlighting the enforced deprivation and emerging challenges for people with the disease, despite the improvement in life experience and expectancy in recent years.

Presenting the data at the CFI National Conference 2026, Sarah Tecklenborg, CEO of CFI, said: “Our research highlighted the significant financial burden many people with CF and their families face daily. Whether they are a parent who gives up work for the caring responsibilities required to keep a child with CF well, a person with CF covering the extensive costs of multiple hospital visits each year, or missing education or career opportunities due to CF, there are significant lifelong financial stresses associated with CF.

“We are incredibly proud to be working with Trevor and would like to thank Trevor, the host locations, and everyone involved in ‘The Cost of Breathing’. It is not a comfortable story, but it is one told with hope. Trevor confronts the pervasiveness of social and economic poverty, yet shares the positivity of his story. We invite everyone to visit the exhibition and join us on the journey to highlight and address these uneasy truths.”  

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