Cystic Fibrosis Carrier Screening: Care Instructions

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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 Canada recommends carrier screening for family planning purposes for:

  • People who have a family history of CF.
  • People with a partner who has a family history of CF.
  • People who have a medical condition that might be related to CF, such as male infertility.

If you are pregnant and have not had CF carrier screening, the Society of Obstetricians and Gynaecologists of Canada (SOGC) recommends testing for:

  • People who have a positive family history of CF.
  • People who have symptoms of CF.

The SOGC does not recommend routine screening of all women.

Talk to a genetic counsellor or your doctor. Be sure you understand the benefits and risks of the test. If the test shows that you are a carrier of cystic fibrosis (CF), your partner should also be tested. If you had this screening test before, do not get tested again. Give your past results to your doctor.

Why would you not have the test?

Some people choose not to do testing because it would not change their decisions about having children. Genetic counsellors are trained to help you understand your risk for having a child with cystic fibrosis. They can help you make well-informed decisions.

Where can you learn more?

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

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