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Cystic Fibrosis Carrier Screening: Care Instructions

Your Care Instructions

Cystic fibrosis is a lifelong illness. It causes mucus to become thick and sticky. The mucus can then clog passages in the body, often in the lungs and pancreas. This can cause breathing, sinus, and digestive problems.

Cystic fibrosis is caused by a change in a gene. The changed gene is passed down in families.

To pass on this disease, you and your partner both must be carriers of the changed gene. A carrier has the changed gene but does not have the disease. If both of you have the changed gene, your child would have a 25% (1 in 4) chance of having the disease and a 50% (1 in 2) chance of being a carrier of the gene.

You can have a blood test to find out if you or your partner carries the gene. Another test can be done during pregnancy to see if the baby has the condition.

If the tests show that you and your partner are carriers, you will face some hard questions. It may affect your decision about whether to have children. You may need to decide if you will have tests during pregnancy to find problems in the baby. Those test results might lead to tough decisions.

Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if you are having problems. It's also a good idea to know your test results and keep a list of the medicines you take.

Why would you have this screening?

Cystic fibrosis carrier screening is done to find out if you are a carrier of a changed gene that causes cystic fibrosis.

Some people choose to have this test if:

  • They are pregnant or are thinking about getting pregnant.
  • Cystic fibrosis runs in their family or their partner's family (or both).
  • They want to know the risk that they could pass on the disease to their child.

Others choose not to have the test because the results would not change their decisions about having children.

How accurate is cystic fibrosis (CF) carrier screening?

This test does a good job of detecting whether a person is a carrier of the most common changed genes that can cause cystic fibrosis (CF). The test is most accurate in Ashkenazi Jews and white people. This is partly because CF occurs most commonly in people of these ethnic groups. As with all tests, there is a small risk that you may be a CF carrier even when the test results show that you are not a carrier.

Where can you learn more?

Go to https://www.healthwise.net/patientEd

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Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.