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Cystic fibrosis

4-minute read

Cystic fibrosis is an inherited condition that mostly affects the lungs and digestive system. It can be treated but there is no cure. This page provides information about cystic fibrosis to help you understand the condition and find the support you want.

About cystic fibrosis

People with cystic fibrosis (CF) develop an abnormal amount of thick and sticky mucus in their lungs, airways and digestive system. This prevents the organs working properly and can lead to repeated infections and damage to the lungs.

A generation ago, few children with cystic fibrosis lived to become adults. Now, people with cystic fibrosis can now live into their 40s due to improvements in diagnosis and treatment.

CF is a genetic condition. Two copies of the gene are needed for CF to show up. So the CF gene must be inherited from both parents for a baby to have the condition. If both parents are carriers, then there is a 25% chance in each pregnancy that their baby will have CF. There is a 25% chance that their baby will be unaffected, and a 50% chance they will be a carrier of the CF gene.

Carriers have one copy of the CF gene, but they don’t show the symptoms. They usually don’t know that they carry the faulty gene. They usually don’t know if their partner is a carrier either. Most babies with CF are born to parents who did not know their children were at risk.

How do I know if my child has cystic fibrosis?

Most people with cystic fibrosis are diagnosed at birth, although a few aren’t diagnosed until later in childhood or even in adult life.

Parents of all newborn babies are offered a screening test known as the ‘heel prick’ test. This is a blood test that analyses the baby’s chromosomes and DNA. It can show whether the baby is likely to have CF or be a carrier. If the result is positive, the baby’s sweat will be tested a few weeks later to diagnose CF.

If you are thinking about having a baby, and are concerned about the risk of CF, you can ask your doctor or obstetrician for a carrier screening test before becoming pregnant. The blood or saliva test can show whether you or your partner carries the CF gene. If there is a high risk of passing on CF, you can talk to a genetic counsellor and consider other fertility options such as using IVF.

If you’re pregnant, you can have carrier screening early in your pregnancy if there is a family history of CF. If you and your partner are carriers, doctors can perform a chorionic villus sampling test to find out if your baby has CF.

What if my child has cystic fibrosis?

If you’ve just found out your child has cystic fibrosis, you’ll need support as you handle the news. It’s a good idea to find out as much as you can about CF. Cystic Fibrosis Australia supports families living with the condition.

If you are pregnant, you need to work out whether to have the baby or consider a termination. You can ask your doctor to refer you to a genetic counsellor who specialises in helping people in your situation. You can also call Pregnancy, Birth, and Baby on 1800 882 436 for advice and support.

People living with CF need daily treatment to slow down the condition. This includes physiotherapy to clear the airways, medicines to prevent infection and a special diet. This can take hours each day and many families find it very stressful.

What assistance is available?

You can apply for various types of financial support and might be able to get practical help through the National Disability Insurance Scheme. You can also call Pregnancy, Birth, and Baby on 1800 882 436 for advice and emotional support.

What will happen in my next pregnancy?

If your baby has CF there is a 25% chance that your next baby could also have CF. Ask your doctor to refer you to a genetic counsellor for advice. The counsellor can discuss ways of ensuring your next baby is healthy, including using IVF to select a healthy embryo.

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Last reviewed: April 2020

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