What Increases Your Risk

Cystic fibrosis is a genetic disorder. Specifically, cystic fibrosis is an autosomal recessive disease. This means that to get the disease, you must inherit the changed (mutated) gene from both parents. Keep in mind:

• If a person inherits the changed gene from only one parent, he or she will not develop cystic fibrosis but will be a carrier of the disease. Carriers may pass the cystic fibrosis gene defect on to their children.
• If you are planning a pregnancy and you are white, talk to your doctor about having a genetic test to find out your chances of having a child with cystic fibrosis. The disease is much more common in white people than in people of other races.

When To Call a Doctor

It is important to diagnose and treat cystic fibrosis early. Call your doctor if your child:

• Has frequent lung infections (pneumonia), colds, an ongoing cough, shortness of breath, or wheezing.
• Coughs up mucus that contains blood.
• Does not gain or maintain weight.
• Has smelly, large, greasy stools or diarrhea.
• Tires easily during activity.
• Has rounded, flat fingertips (clubbing).

Call your doctor if your child who has been diagnosed with cystic fibrosis gets worse in any way. Typically, this is when your child:

• Has increased coughing or has a cough that is getting worse.
• Has new wheezing or has wheezing that is getting worse.
• Has more trouble breathing than usual.
• Has lost weight or is not gaining weight, without an explanation.
• Is having symptoms that you and your doctor have discussed as being more serious problems.

Watchful waiting

Watchful waiting is a period of time during which you and your doctor observe your child's symptoms without using medical treatment. Watchful waiting is not a good idea for people who have cystic fibrosis. If your child has any signs of cystic fibrosis, even if they seem to be mild, see the doctor right away.

Who to see

The following doctors can diagnose and treat cystic fibrosis:

• Pediatrician
• Family medicine doctor
• Pulmonologist
• Internist
• Gastroenterologist

Other health professionals may also be involved in your child's care:

• Respiratory therapist
• Physical therapist
• Registered dietitian
• Exercise physiologist
• Social worker
• Psychologist
• Pharmacist

Cystic fibrosis multidisciplinary specialist centers offer the best, most comprehensive treatment available by addressing the medical, nutritional, and emotional needs of people who have cystic fibrosis. You can locate one by contacting the Cystic Fibrosis Foundation at www.cff.org.

To prepare for your appointment, see the topic Making the Most of Your Appointment.