Cystic Fibrosis Trust launch new Growing older with CF report

As the result of significant improvements in treatment, standards of care and basic understanding of cystic fibrosis, there are now more adults than children with the condition. We believe that we can reach the day when everyone born with cystic fibrosis can live a life unlimited by their condition.

However, as people with cystic fibrosis live longer into adulthood, they are encountering new challenges and issues. In December 2023, the Trust hosted a workshop where over 50 people, including researchers, healthcare professionals, funder representatives, staff from the Trust and representation from the CF community, attended to open conversations around growing older with CF.

The workshop covered topics from better ways to manage care for people developing conditions that require support from other medical specialists to understanding how and why some people with CF may develop cardiovascular disease in a different way and in larger numbers compared to the general population.

Access to CFTR modulators has improved the health of many people with CF, meaning that they are likely to live healthier, longer lives that are less limited by their condition. However, we don’t understand how these medicines will impact the lived experiences of people with CF going forward.

At the workshop, Jane, who recently celebrated her 60th birthday and has CF, shared her own experience. 

CF teams have traditionally been the first point of call for people living with CF for all of their health concerns. However, as they get older, people are likely to need care from a wider group of medical specialisms. Jane catalogued multiple occasions highlighting the lack of knowledge and support available to her as someone growing older with CF. 

“We hope the workshop and this report will generate new networks with ideas and opportunities for research proposals to address this priority.” - Dr Lucy Allen, Director of Research and Healthcare Data at Cystic Fibrosis Trust.

Read the full Growing older with CF report

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.