Cystic fibrosis is a chronic inherited disease. In people with cystic fibrosis, the body produces abnormally thick, sticky mucus that builds up in the lungs, pancreas and other organs. This build-up can lead to serious breathing, digestive and other health problems.
It has been shown that people with cystic fibrosis fare better when they receive care from a multidisciplinary cystic fibrosis clinic or center, such as the Rush Cystic Fibrosis Center, which is accredited by the Cystic Fibrosis Foundation (CFF) to provide care for both children and adults.
Cystic fibrosis: what you should know
- Children with cystic fibrosis are often healthy enough to go to school and participate in activities. Symptoms tend to grow worse in adulthood.
- These cystic fibrosis symptoms do not affect children with the disease but often appear in adulthood:
- When children with cystic fibrosis become adults, they should switch to an adult cystic fibrosis specialist. The Rush Cystic Fibrosis Center has both pediatric and adult specialists, who work together to ensure a smooth transition and seamless care.
- To develop cystic fibrosis, a person must inherit defective cystic fibrosis genes from both parents. If you have only one defective cystic fibrosis gene, you will not have the disease, but you may pass the gene to your children.
How can I get help for cystic fibrosis?
Early diagnosis and referral to a cystic fibrosis clinic or center can help people with cystic fibrosis live longer and have a better quality of life. Take your baby or child to the pediatrician if you notice any of these symptoms:
- Belly pain caused by severe constipation
- Frequent greasy, bulky stools or difficulty with bowel movements
- Increased gas, bloating or a belly that looks swollen (distended)
- Delayed growth
- Excessive coughing
- Frequent lung infections
- Salty-tasting skin
- Wheezing or shortness of breath
If you or your child has been diagnosed with cystic fibrosis, tell your care team right away if you notice new symptoms or if existing symptoms grow worse.
Care for cystic fibrosis at Rush
- Disease management: There is no cure for cystic fibrosis, so doctors focus on preventing and relieving symptoms, as well as slowing progression of the disease. Since cystic fibrosis affects each person differently, every treatment plan is unique. The team at the Rush Cystic Fibrosis Center will tailor services and care around your family’s needs.
- Sweat test: If your child has a positive newborn screening for cystic fibrosis, you can schedule a sweat test at Rush for your baby. Typically, you can schedule the test at Rush in less than two weeks after the positive newborn screen.
- Genetic testing and counseling: Rush offers genetic testing and counseling for children and adults.
Why choose Rush for cystic fibrosis care
- The Rush Cystic Fibrosis Center, which is accredited by the Cystic Fibrosis Foundation (CFF), includes both pediatric and adult cystic fibrosis clinics to provide inpatient and outpatient care for patients of all ages.
- The Rush Cystic Fibrosis Center is one of three cystic fibrosis centers in the country to receive an award for outstanding partnership from the CFF.
- The pediatric pulmonary function laboratory at Rush offers specialized lung function testing for children from three to 18 years of age. It’s one of only a handful laboratories in Illinois dedicated to evaluating and testing children with lung disorders.
- The adult pulmonary function laboratory at Rush has a CFF-approved sweat testing laboratory. It is recommended that sweat testing — the gold standard for diagnosing cystic fibrosis — be performed at a CFF-accredited care center such as Rush, where strict guidelines are followed and monitored to make sure test results are accurate.