Pediatric Pulmonology

Cystic Fibrosis Center

Frequently Asked Questions

What is cystic fibrosis?
Cystic fibrosis is the most common and most serious genetic disease in Caucasians. One in 2,500 Caucasian babies in the United States is born with this disease. This disease interferes with the working of the lungs and the digestive system.
Could my child have cystic fibrosis?
Even if there is no history of disease in your family, if you and your partner are both carriers, there is a 1 in 4 chance with each pregnancy that your child will have cystic fibrosis.
Could I be a cystic fibrosis carrier?
One in 25 Caucasians is a carrier. Being a carrier does not affect one's health.
Could I have a child with cystic fibrosis even though I have other children who are healthy?
Yes. For parents who are both carriers, there is a 1 in 4 chance with each pregnancy that the child will have cystic fibrosis. Therefore, a child with cystic fibrosis may not be the firstborn.
Who benefits from a carrier test?
Anyone who is Caucasian and now pregnant, or planning children in the near future, and who probably would want her unborn child tested for cystic fibrosis, if at risk, may benefit.
Why should I be tested?
To aid in decisions concerning pregnancy.
Who may not benefit from this carrier test?
  • Anyone who is of African or Asian origin
  • Anyone who does not want children, is unable to have children, or is not planning children in the near future
  • Anyone who is pregnant but not in contact with the father of her unborn child
  • Anyone who would not want her unborn child tested
What are the symptoms of cystic fibrosis?
The first symptoms of cystic fibrosis usually occur in early childhood. They affect the lungs and digestion. In cystic fibrosis, abnormally thick mucus collects in the lungs. This mucus causes repeated coughing, wheezing, and attacks of bronchitis and pneumonia. In later years, patients commonly tire easily and have shortness of breath on effort. About 85% of children with cystic fibrosis have difficulty digesting their food. They have frequent, large greasy, foul-smelling stools. They often gain weight slowly and are small for their age.
How can I find out if I'm a carrier for cystic fibrosis?
Ask your doctor to perform the cystic fibrosis carrier test on your blood . If you are having other blood tests, the blood for cystic fibrosis carrier testing can be drawn at the same time. If not, blood can be drawn especially for the cystic fibrosis carrier test.
Must I have the test?
No, it is your choice.
If my test shows that I am a cystic fibrosis carrier, what happens next?
Your physician may refer you to a genetics counselor for an explanation of exactly what it means for you and what choices you have. If you have a partner, you may wish to ask your partner to be tested.
Is the cystic fibrosis carrier test perfect?
No. If your test result is abnormal, you are definitely a carrier. However, if the test is negative, the possibility of you being a carrier is not completely ruled out. There is a small chance that you could be a carrier even with a negative test.
What happens if my partner and I are both cystic fibrosis carriers?
If you are pregnant, you can request that your unborn child be tested. If you are not pregnant now, you can consider having an unborn child tested in the future. Thus, having a cystic fibrosis carrier test may be useful to you in family planning.
How is cystic fibrosis treated?
Children with cystic fibrosis take medicines to loosen the thick secretions in their lungs. They often take antibiotics. Parents clap their child's chest several times a day to loosen secretions and help them drain.

Children with digestive problems due to cystic fibrosis need to take medicine (pancreatic enzymes) before meals to help them digest their food.
How long do patients with cystic fibrosis live?
Babies born today can expect to live longer because treatment is improving. Adult patients living with cystic fibrosis can average 37 years of life. Most patients develop problems as they get older. Some patients survive to their 50s or 60s; others die early in childhood.

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a chronic condition in children and adults. It most often affects the lungs and digestive system of the body. Children with CF may have chronic lung infections and/or poor digestion of their food. Symptoms which are sometimes seen in CF but are also common in other illnesses may include:

  • A chronic cough
  • Frequent infections in the lungs
  • Wheezing/asthma
  • Nasal polyps
  • Difficulty gaining weight
  • Salty taste of the skin