Ways to manage cystic fibrosis

On this page, find out ways you can help manage your child’s cystic fibrosis.

Life with cystic fibrosis (CF) can be challenging. But treatments can manage the symptoms and make the condition easier to live with. Most school-age children with CF are quite healthy and can join in all school activities.

The Cystic Fibrosis Trust has detailed information on life with CF, from childhood through to adulthood.

Tips on managing cystic fibrosis

Make sure your child:

• has regular check-ups. Their CF team will arrange these check-ups for you. They will check how well treatment is working and makes changes if needed.
• takes all the treatments their specialist team prescribes. These may include antibiotics, physiotherapy and other medicines.
• gets the right nutrition. This is vital to help your child grow and keep healthy. Your child’s dietician can provide advice.
• is up to date with all their routine vaccinations and has the regular flu jab and coronavirus vaccine once they're old enough.
• gets enough exercise. This is an important part of their physiotherapy treatment and will help manage CF. Ask their physiotherapist to suggest good ways of exercising.
• avoids cigarette and vape smoke. Smoke could make their symptoms worse. Our section on risks to children’s lungs has more information about the risks of smoke and other air pollution.
• gets the right support in school. The Cystic Fibrosis Trust has information for parents and teachers about starting school and secondary school.

Where to get more advice and support

Your child’s CF team can provide advice on many issues, such as school, travel, and respite care for yourself. They can refer you to other experts for detailed advice too. The CF clinic where you get your care may have a 24-hour helpline that you can use for urgent advice.

In times of change or upheaval, you and your child might need psychological support. The CF team may have a psychologist. If it does not, you can ask your doctor for a referral – help is available to you.

People with first-hand experience of the condition often understand more than anyone else what you and your child are experiencing. We’ve set up a Parent and Carer Support Network, which provides a space for parents, carers, and families of children with all lung conditions to come together. It’s strongly recommended people with CF avoid being together in person, to avoid giving each other lung infections. This is called cross-infection. There are lots of ways to connect remotely - find out more on the Cystic Fibrosis Trust website.