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The University of Chicago Medicine - Comer Children's Hospital

Pediatric Cystic Fibrosis: Frequently Asked Questions

Today, CF is usually diagnosed at birth through newborn screening, with more than 75 percent of patients diagnosed by the age of 2. The sweat test measures salt in a child’s sweat and can confirm the diagnosis.

CF is a genetic disease, and a genetic test can determine if you carry the genetic mutation that causes it. To have CF, a child must inherit the genetic mutation from both parents. People who inherit the mutation from only one parent are called carriers and do not have CF. If you may be a carrier, you and your partner should consider getting a genetic test.

Treating CF requires therapies that target parts of the body, especially the lungs and the digestive system. Because CF symptoms can differ widely from child to child, there is no typical treatment plan for children with the disease.

We work closely with CF patients and their families to create individualized treatment plans. Typical therapy often includes: airway clearance to help loosen airway mucus, inhaled medicines, pancreatic enzyme supplement capsules, and multivitamins.

There is ongoing research through the CF Foundation to find additional therapies that could help improve key symptoms of CF by targeting the disease at its root.

Although there is no cure for CF, the outlook for patients with this lung disease is better than ever. According to the Cystic Fibrosis Foundation, the median survival for people with CF is in the early 40s. Many patients live into their 50s and 60s and are able to lead full lives that include work, family and other pursuits.

In general, physical activity is good for children with CF because it helps them improve their lung function and clears mucus from the airways.

You play a pivotal role on your child’s care team. To make sure your child receives the best care:

  • Bring a list of your child’s medications to each visit, and tell us if you need refills.
  • Let us know if are having insurance issues.
  • If you do not understand something, please ask.
  • Tell us if you have any concerns about your child’s treatment plan.