Shining a light on liver disease
Latest CF Registry data shows more than 23% of adults with CF were living with liver disease in 2024, a 5% increase since 2019. More people with CF show some liver changes, such as raised enzymes that may require monitoring.
This rise in those diagnosed with CF-related liver disease (CFLD) could partly be because people with CF are having screening for liver disease from a younger age, but also because they are living to an older age.
People with more advanced liver disease may experience jaundice (a yellowing of the skin and whites of their eyes), problems with weight gain and muscle strength, or swelling in the abdomen. A diagnosis of CF-related liver disease means additional monitoring which, for those already undergoing multiple hospital appointments, blood tests, having IVs and taking over 100 tablets a day, is another burden they could do without.
You can’t stop CFLD from developing, but remaining healthy by avoiding drinking too much alcohol, exercising, and eating a balanced diet can help to protect your liver.
Find out more about CF-related liver disease in this factsheet
Mark, 56, said “While Kaftrio has done an amazing job for me and completely transformed my life, I didn’t start taking it until I was 50. There was a lot of damage to my organs that had already taken place before then.
“In my late twenties and early thirties, I was diagnosed as having CF-related liver disease as well as CF-related kidney disease and CF-related diabetes. Since then, I have taken medication for my liver and its function has been monitored closely but it hasn’t progressed significantly, although I’ve had occasional spikes.
“I know it can’t get recover but hope my liver will continue to stay as it is. With my kidney disease, I can help it by staying hydrated, but there is not as much I can do for my liver. Despite that, it doesn’t keep me up at night. My life has changed so much in the last five years – Kaftrio has given me a second chance at life and I don’t want to waste it worrying about things I can’t change.”
Despite advances in treatment, our latest registry data shows the health challenges that still remain for people with CF - such as managing complications like CF liver disease. CF is relentless and people are dealing with it 24/7, 365 days a year. Crucially, we need more research to find out more about how to prevent, treat, and manage CF-related liver disease and ensure people with CF can live a life without limits.
Dr Lucy Allen, Director of Research and Healthcare Data at Cystic Fibrosis Trust
Cystic Fibrosis Trust has awarded its latest Clinical Training Fellowship Programme award to King’s College London in a fellowship aimed at improving management of advanced liver disease.
This CF Week, support funding ground-breaking research by making a donation, signing up to Wear Yellow Day, or take part in 5k Your Way.
CF: It's complicated
Join us this CF Week, 8–14 June, and help shine a light on the daily realities of living with CF.