1 in 3 people with CF worry about their health every day shows new data released to launch Cystic Fibrosis Trust’s ‘no day off’ campaign

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Cystic Fibrosis Trust today released new data, which showed almost 80 per cent of people with CF said their physical health had prevented them living life to the fullest over the last year, and a third worried about their health every day. 

They also revealed that, despite recent improvements to CF care, 90% of those with CF worried about the future, with 43% saying they were worried every day. 

These early findings are launched to support the Trust’s latest awareness campaign, ‘no day off’, highlighting the reality that though many people with cystic fibrosis have “off-days”, they can never have a day off from the realities of living with cystic fibrosis and the non-stop grind of a life limiting condition. 

Find out more about the campaign here

Our latest data is showing that although in the last 60 years we’ve seen amazing breakthroughs in treatment and care, a third of people with CF are living in daily fear of their condition. As we’re highlighting today with the launch of our new campaign, there really is ‘no day’ off from the lifelong, life limiting condition with people spending hours on their daily treatments.

Despite recent advances in CF care, we know we still have hard work ahead of us before everyone CF can look forward to a life without limits.

David Ramsden, Chief Executive of Cystic Fibrosis Trust

Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food. There are over 11,000 people with CF living in the UK. Of those who died from cystic fibrosis in 2022, the median age of death was just 33 years of age.

People with CF experience a build-up of thick sticky mucus in the lungs, digestive system, and other organs, causing a wide range of challenging symptoms affecting the entire body. 

Managing these symptoms requires those with CF to undertake a heavy and time-consuming treatment burden every day of physiotherapy, nebuliser therapies, and medications; most people with CF take at least thirty tablets day. This physical and mental burden is needed even on a “good day” and can increase further when people acquire infections and become unwell. 

Jonathan Farrow, who features in the 'no day off' campaign, said: “Cystic fibrosis is a 365 day a year, 24 hour treatment regime, which gets harder when you’re not well. It’s a massive balancing act between taking the medication when you need to take it, not interfering with other medication, and also making sure you do all you need to do. And of course that never changes if you go away on holiday, or something like that, all of that regime goes with you, it doesn’t stop.”

"You never get a day off when you have CF". Jonathan Farrow stands with his arms crossed next to the awareness campaign messaging

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