CF carriers
If you have a variant (mutation) in one copy of the CF gene, you're a carrier for cystic fibrosis (CF). Find out more about what that means for you here.
A baby will be born with CF if they inherit two CF gene variants – one from each biological parent. This means that each biological parent of a child with CF is either a carrier or a person with CF themselves.
Around 1 in 25 people in the UK are carriers for CF, usually without knowing. Relatives of someone with CF have a higher chance of being carriers.
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What is a carrier? Are carriers healthy?
A person with a variant (mutation) in only one copy of the CF gene is called a carrier. A carrier does not have CF, but if their partner is also a carrier, there’s a chance that their children will inherit CF.
Most carriers will not have any symptoms. Some research has found that carriers have a very small chance of having very mild symptoms, such as a higher risk of sinusitis or pancreatitis. Carriers do not need any CF treatment. If you have any concerns about your health, you can speak to your GP.
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Why is it useful to know if I'm a carrier?
Carriers do not have CF because they still have one copy of the CF gene working as it should. However, if their partner is also a carrier, there is a chance that their children will have CF. If you or your partner are related to someone with CF, carrier testing can help to better understand your chances of having a child with CF.
Carrier testing is a personal choice. If you decide not to have a test, you will still receive care and support from healthcare professionals.
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Genetic counselling
If you and your partner are carriers or have CF, you will be offered genetic counselling to discuss family planning options, including tests that may be available to you during pregnancy or before getting pregnant. If you are thinking of starting a family, having these discussions early on with a genetic counsellor can give you time to consider your options and, in some cases, undertake pre-pregnancy workup. A genetic counsellor will give you information to help you make decisions that are right for both of you.
You can be referred to a genetics counsellor by your GP.
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Family genetic testing
Genetic testing called carrier testing is a way to find out if you have a variant in one copy of the CF gene and are a carrier of CF. If you are related to someone who has CF or your partner has CF, is related to a person with CF, or is a carrier of a CF gene variant, you can be referred for carrier testing on the NHS.
This is sometimes called cascade screening.
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Antenatal screening
There is no routine UK-wide antenatal screening for cystic fibrosis. However, if you and your partner are carriers or have CF, there are antenatal tests (tests that are done during pregnancy) to see if the baby has CF. Your genetic counsellor can tell you what your options are, and about any risks that may come with these tests.
For couples considering testing during pregnancy, it is important to get in touch with maternity services as soon as possible after finding out that you are pregnant to ensure a timely referral to clinical genetics. This will help to maximise the testing options available to you and give you time to consider these.
Find out more about screening for CF in pregnancy
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Family planning for carriers
If you've already got a child with CF, you may be wondering what your child's diagnosis means for future family planning. Here, we try to answer your questions about CF and future pregnancies.
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Diagnosis questions, answered
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Here to help
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.