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

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 is newborn screening affecting the diagnosis of cystic fibrosis?

Many states, including New York, conduct newborn screening for cystic fibrosis. This means that infants are screened and identified as possibly having cystic fibrosis. Further testing needs to be completed to make the diagnosis definite. This screening program is important because it alerts caregivers to a potential health condition before the infant has a chance to develop breathing and nutritional problems. By making the diagnosis early, doctors and other caregivers can start treatment early and avoid some of the complications of cystic fibrosis.

How is cystic fibrosis diagnosed?

The best test to diagnose cystic fibrosis is a sweat test which should be performed at a Cystic Fibrosis Center accredited by the CF Foundation. During a sweat test, the skin is stimulated and the amount of salt (sodium chloride) in the sweat is collected and measured. If the test shows a high level of chloride then the diagnosis of cystic fibrosis is confirmed.

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?

Survival in CF has been steadily improving every year. The age at death for half of all CF patients in this country was estimated to be 37.4 years in 2008. This figure includes all the patients followed by the CF Foundation, many of whom were born in the 1970s and 1980s.  Babies born today can expect to live longer because treatment is improving. Most patients develop problems as they get older. Some patients survive to their 50s or 60s; others die early in childhood.

What is the CF Foundation?

The CF Foundation is a nonprofit donor-supported organization founded in 1995. Its mission is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. Further information about the CF Foundation can be found at www.cff.org.