What is it like for siblings if their brother or sister has CF?

Lots of siblings have very positive relationships with their brothers and sisters who have CF. They might sometimes worry about their brother or sister, especially if they are unwell.

At times, siblings might find it hard because they might need to avoid kissing and cuddling their brother and sister if they have a cough or a cold. This is because they may pass on germs which might make their brother and sister unwell.

Siblings can sometimes feel left out because daily physiotherapy, taking medications or hospital appointments can take up a lot of time. They can also feel frustrated at not being able to go out and do as much as other families because of the time their sibling has to spend doing their treatments.

Siblings might also find it difficult if their brother or sister is staying in hospital, as they might miss their parent/s and their sibling and their usual routine might change.

Children with CF often need to follow a special diet, as they may need extra calories to stay healthy. This can be hard for siblings who may be encouraged to eat different foods than their brother or sister.

What causes CF?

CF is a genetic condition that someone is born with. It is passed from parents to children. It cannot be caught like a cold. In some families it will affect some children, but not others. Someone with CF will have the condition all their life. All babies have a blood test when they are born. This will usually show if they have CF.

What does it mean?

Not all children are affected in the same way. Some are affected more and some less. Children with CF can do most things that children without CF can do, such as go to preschool and school. CF causes mucus to build up in their lungs and digestive system. This may mean they are more likely to get chest infections. They might also cough or wheeze . They will need to manage their weight to help them stay healthy, and their tummy might feel uncomfortable sometimes, and they might need to use the toilet more often. They may have to go into hospital at times.

What treatment is there?

There is no cure for CF but there are many treatments that help people who have it, and new medicines are being developed. Treatments include:

• physiotherapy for their lungs
• exercise
• medicines to make the mucus thinner and to make breathing easier
• medicines to fight lung infections
• a special diet that helps with digestion

Children with CF need to do lots of exercise to help keep their lungs healthy. Toddlers often like running, jumping and trampolining. At school, children with CF can take part in P.E. and games just like other children in their class.

This information has been approved by The Cystic Fibrosis Trust, January 2025