What is Cystic Fibrosis?
Cystic Fibrosis (CF) is a disease that causes breathing and digestion problems. Symptoms usually begin in the first year of life and get worse over time. Some children are very sick, and others are not. Problems may include coughing, repeated pneumonia, lung damage, diarrhea and poor growth. People with CF are not mentally retarded. Their appearance is not affected. Life is usually shortened, but most children with CF live 20-35 years. There is no cure. Treatment is usually medicine and physical therapy.

What causes CF?
CF is an inherited disorder. It is caused by having a pair of genes that are both changed (not working). A person with only one changed gene (also called a mutation) is called a “carrier”. Carriers are not ill. Gene’s do not change during one’s lifetime. Therefore a carrier will always be a carrier, but will never get sick with CF.

What is the chance my child will have CF?
First, both parents must be carriers of CF. If you are both carriers there is a 1 in 4 chance that your baby will have CF. Your chance of being a carrier depends on whether someone in your family has CF and on your race. If both you and your partner are Caucasian, your chance of having a child with CF is about 1 in 3,500. If only one of you is Caucasian, it is smaller. If neither of you is Caucasian, your chance of having a child with CF is very small.

How can I find out if I am a carrier of CF?
There is a blood test that looks for the changed gene. If you want to have the blood test, a small sample of blood will be taken from your arm.

Why would I want to have this blood test?
You would want to have this blood test to find out whether you are at high risk to have a baby with CF. If the carrier test shows that you have an increased risk, more tests would be needed to find out whether the baby actually has CF. If this is important for you to know, have the test.

Can I have a baby with CF even if my test result is normal?
Yes. A normal result means a changed gene was not found in you. But the test cannot find all changed genes.

Why is CF testing recommended?
Cystic fibrosis is a common disorder for Caucasians. If either you or the father of the baby is a Caucasian, CF testing is recommended.

Is CF testing required?
No. CF testing is not required, it is an option. Choosing CF carrier testing is a personal choice. If you have any questions or concerns, you may want to discuss it with your doctor.

Information above is consistent with the 2001 Clinical and Laboratory Guidelines, Preconception and Prenatal Carrier Screening for Cystic Fibrosis, published by the American College of Obstetricians and Gynecologists.