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Not just the lungs: Shining a spotlight on cystic fibrosis affecting the whole body
Cystic fibrosis (CF) is a life-long, life-limiting condition that affects the whole body and requires multiple daily treatments and therapies to stay well. It’s 24/7. 365 days a year. You never get a day off from CF. But while 90% of the population have heard of CF, nearly 30% of people think it only affects the lungs. Many people with cystic fibrosis view it as a Multiple Long-term Condition (MLTC), where someone has two or more chronic conditions.
Find out more about how CF affects the whole body
Latest data from our UK Cystic Fibrosis Registry shows that there are more people living with CF than ever before. This number has risen year on year, with over 11,300 people recorded in 2024. As population numbers continue to grow, public understanding of CF remains low.
Margot is 21 and has cystic fibrosis. She suffers from Distal Intestinal Obstruction Syndrome (DIOS), a gastrointestinal symptom of CF.
She said: “My day-to-day life consists of loads of medication, rest, snack breaks and Creon for digestion. I’ve been really lucky to not have any chest treatments as my lungs are fantastic, but I still have around 30 tablets of Creon and 20 tablets for other treatments every day – this really surprises people.
"Explaining cystic fibrosis is difficult for me without comparing it to other, more common conditions to draw examples from. As a result, I think people underestimate how complex CF can be, and how difficult it can make day to day life. Growing up I realised that on the outside, I looked healthy, and this made it difficult for others to “see” the CF I was describing – especially when I was energetic and leaping around hockey pitches. If I could educate everybody in the UK in one go, I’d show them what both a good and bad day looks like in my life.”
David Ramsden, Cystic Fibrosis Trust Chief Executive, said: “People with cystic fibrosis live with a 24 hour a day, 365 day-a-year life-limiting condition that affects the whole body and impacts every part of their lives.
“We're funding vital research to understand and treat the symptoms of CF throughout the body, and providing information and support to enable people with CF to stay as healthy as possible for as long as possible.
“With NHS budgets under strain, it's critical that specialist, multi-disciplinary CF teams have the resources needed to respond to the complex and changing needs of a CF population. We won't stop until everyone with CF can live a life unlimited by the condition.”
CF Registry data has also revealed that almost one third of adults with CF are also living with CF diabetes (CFD), where the pancreas is prevented from producing insulin properly due to inflammation and the build-up of mucus, caused by CF.
Annabelle, 26, said: “I got diagnosed with CF diabetes when I was 11 years old. I’d describe it as like constantly being on a rollercoaster. Sometimes the rollercoaster is going up and you end up going really high and that makes you feel ill. Sometimes it goes really low and that makes you feel ill. And then sometimes you're straight in the middle, which is great, but that doesn't happen all the time.
“The difficulty with CFD is the unpredictability of it. It's treated like type 1 diabetes, but because of the mechanisms that underlie it, I could eat the exact same thing one day and have an amount of insulin, and I'd be fine. And then I can eat the exact same thing another day and have the same amount of insulin and be off, because sometimes our bodies do release insulin and sometimes, they don't.”
You can join in the conversation on social media with the hashtag #notjustlungs.
Find out more about our research goal to treat all of the symptoms of CF throughout the body
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