Library exhibition looks at the cost of breathing

The exhibition was launched at the CFI National Conference 2026 on February 7 in Limerick and embarked on a national tour which aims to highlight the societal and economic challenges that many people living with CF face, despite advancements in recent years.

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

It found that 44.9% of people with CF struggled to meet their monthly bills; 28.1% are unable to work due to their CF; 30.3% of those in full time employment experience enforced deprivation – and 63.8% receive Disability Allowance experience enforced deprivation.

That’s why Cystic Fibrosis Ireland are highlighting the enforced deprivation and emerging challenges for people with CF, despite the improvement in life experience and expectancy in recent years.

Trevor O’Donoghue of Radharc Perspective & Life Coaching, a photographer based in Killarney who has CF. In 2016, he began working as a self-employed photographer and while his business took off, he burned out.

He became involved in the project to strengthen awareness of the realities of living with the condition, which is sometimes referred to as a hidden disability/illness.

While physical care is second nature to a pwCF, Trevor realised he also needed to care for his mind. This opened the door to mental health, mindfulness and self-care.

In 2019, Trevor and his fiancée Ciara created photographic therapy called Mindography which later became Radharc.

This grew into global photo challenges and workshops during the pandemic, connecting thousands of people across more than 60 countries.

“Ireland is no stranger to the story of CF,” he said.

“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,” he added.

“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 experiences, 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.”

Cystic Fibrosis is an inherited condition that primarily affects the lungs and digestive system – and Ireland has the highest rate of Cystic Fibrosis per capita in the world, with some of the most severe types.

Approximately 34 new cases of Cystic Fibrosis are diagnosed in Ireland each year -that’s one in every 2,300 babies.

Cystic Fibrosis Registry of Ireland data shows that the median predicted age of survival for a person with Cystic Fibrosis born in Ireland today is 62. This means that half of those born with CF today are expected to live until at least the age of 62, which reflects incredible progress in the care and management of CF in Ireland but also the considerable additional work still to be done.

There are more than 1,400 people living with Cystic Fibrosis in Ireland and the number is increasing each year as a result of improvements in treatment and care.

“Our research highlighted the significant financial burden many people with CF and their families face daily,” said CFI CEO Sarah Tecklenborg.

“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,” she added.

In addition to the physical exhibition, the virtual gallery was launched online in October 2025 and is available at https://www.cfireland.ie/support-resources/members-events/the-cost-of-breathing.