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Life with cystic fibrosis

With advances in care, treatment and understanding of the condition, people with cystic fibrosis are living longer and healthier lives than ever before. It is no longer a barrier to working, travelling or having a family – but it does create obstacles.

Happy boy running out of hospitalEveryone with cystic fibrosis is unique and will have their own relationship with CF and their own range of symptoms. Some people have relatively stable lung function, while others struggle with this the most. Some require enzymes with every meal to help digest their food, while others don't need any at all. It’s hard to paint a picture that illustrates the 10,000 different stories, but you can find out more about broad themes below.

Daily burden of care

Modern medicines mean that there are many solutions to the challenges that CF brings, allowing people to get on with their lives. However, taking all of those medicines can be time consuming.

People with cystic fibrosis often require more than 50 tablets a day, plus a couple of hours of physiotherapy at home and some nebulised treatments. Low digestive efficiency can also mean more than 1,000 extra calories are required a day, which can be particularly challenging for children.

Find out more about the importance of exercising to stay fit and healthy enough to fight off infections, and our research into this area.

Infections

The lungs of people with cystic fibrosis are more prone to infection. The good news is that there are options for treating these infections, including a range of antibiotics. Infections can mean multiple trips to hospital that last more than a week each throughout a year. This can make it hard to accommodate work, study and support family members (such as children), and some people will require strong antibiotics, which can have bad side effects.

Other effects

Digestive complications can lead to symptoms that some find embarrassing, particularly during teenage years, such as diarrhoea, constipation and wind. Coughing fits are common and can result in vomiting on occasion. Many adolescents and adults with CF will develop CF-related diabetes.

It sounds like a lot to handle, but most individuals will only experience a handful of these complications in their lifetime and there’s lots of support available. More than 50% of adults with cystic fibrosis are in education or employment, achieving their ambitions despite the challenges they face.

Check out our interactive body for more information on the effects of CF, from head to toe!

Information and support

Find out more about nutrition, and aging. Take a look at our resources on fertility, starting school, secondary or higher education and employment. Discover the world of personalised medicine, and see how advances in treatment have improved the outlook for everyone with cystic fibrosis. By finding out more, you'll be better equipped to make informed decisions about what's right for you and your loved ones. Need someone to talk to? Try our helpline, or find out more about CF Connect, our peer-to-peer support service. There's plenty of support available for anyone affected by cystic fibrosis.

Find out more about how CF affects the body, how it's diagnosed and the medications and methods used to treat the condition.

What we're doing about it

Each year we invest millions into cutting-edge research to tackle all of the big challenges faced by people with cystic fibrosis. We provide information and support, including grants to help with the costs associated with the condition, and we campaign hard to ensure the voice of the CF community is heard loud and clear by decision makers. We won't stop until everyone with cystic fibrosis can live a life unlimited by the condition, and whether you want to make a donation or organise a fundraising event, your contribution will make a difference.

Reading material

We have plenty of publications about living with cystic fibrosis, from factsheets by clinicians to our bi-annual 'is' magazine, featuring real-life stories.

Read on

Find support

There's loads of support available for people with cystic fibrosis and their families, from grants to help with taking your medication abroad.

Discover more

Growing older

Growing old can be a daunting prospect for anyone. Find out the answers to all of your questions about cystic fibrosis and aging.

Find out more

Pre-school and primary school

Take a look at our pre-school and primary school pack for more information on school and cystic fibrosis.

Explore the resources

Secondary school

Explore our new secondary school pack for information on making the big transition and information for teachers and schools.

Tell me more

Higher education

Cystic fibrosis doesn't have to stand in the way of further education, but it does require careful thought. Take a look at our resources and tips.

Explore

Employment

Check out our resources to help with you make the most of employment opportunities, including planning for interviews and starting a new job.

Take a look
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