Children and young adults with cystic fibrosis need coordinated care from a team of experts in a wide range of specialties. Specialists with the Duke Children's Cystic Fibrosis Center provide the latest treatments and personalized care to help manage your child's condition and improve their quality of life.
About Cystic Fibrosis
Cystic fibrosis (CF) is a chronic, inherited disease that affects many systems in the body. It causes thick, sticky mucus to build up in the lungs and other organs. The sticky mucus obstructs airways, which can result in troubled breathing. It also tends to cause repeated lung infections that may eventually damage the lung. CF can also interfere with the body’s ability to absorb nutrients from foods and can cause reproductive problems in men and women.
While there’s no cure for cystic fibrosis, there have been significant advances in treatment in recent decades. We use these advances to create individualized treatment programs, which have proven successful in helping people with cystic fibrosis live longer, fuller, and more active lives than ever before.
Learn about the care offered here so you can prepare for your appointments.
Most children with cystic fibrosis are diagnosed during newborn screening; however, children with mild symptoms may not be diagnosed until they are older. Once diagnosed, your child will see our specialists about every three months. We'll perform tests to check your child's health, answer your questions, and make sure you are managing well with airway clearance techniques. For your child's protection, we ask that they wear a surgical mask when entering the hospital and outside the exam room.
Newborns are screened for cystic fibrosis via a blood test within the first few days after they are born. When newborn screening suggests CF, a sweat test confirms the diagnosis by measuring the level of salt in your child's perspiration. It is also used to diagnose cystic fibrosis in older children and teens who were not diagnosed as infants but have symptoms of the disease.
Cystic fibrosis is caused by a mutation in what’s called the CFTR gene. Some newer CF medications, called CFTR modulators, are targeted to specific mutations of this gene. Genetic testing can determine the type of mutation your child has and whether these medications may help.
Routine Visit Tests
Your child's doctors may order imaging tests such as X-rays and CT scans; lung function tests; sputum (respiratory mucus) culture to check for certain bacteria; annual blood work to check your child's nutritional status, liver function, vitamin levels, and other health issues; and screenings for depression and anxiety, as well as diabetes and osteoporosis, which can occur with cystic fibrosis.
Duke Children's Hospital & Health Center is proud to be nationally ranked in nine pediatric specialties.
Accredited CF Center
Our CF Center is accredited by the Cystic Fibrosis Foundation, which ensures that your child receives expert, high-quality care. As an accredited center, we offer:
Access to a Comprehensive Team of Experts
Your child’s team will include doctors who specialize in pulmonology, endocrinology, gastroenterology, and infectious diseases. The team will also include a CF nurse coordinator, nutritionists, respiratory therapists, and physical therapists as well as licensed clinical social workers and psychologists.
Access to Clinical Trials
People in both our pediatric and adult centers who meet certain qualifications can participate in trials of new cystic fibrosis treatments.
Seamless Transition to Adult Care
Our comprehensive program includes helping young adults begin taking responsibility for their own care. We start preparing for the transition to our Adult Cystic Fibrosis Center when your child reaches age 16, providing support and guidance as they begin to manage home treatments, monitor their symptoms, and learn when to seek help from their doctor.
Ongoing Care and Support
Our licensed clinical social workers guide you and your family through the medical system and coordinate the health services your child needs. They can help you communicate with other members of the care team to ensure that the needs of your child and family are being met. They can provide support, help you work with insurance providers, connect you with resources, and help you manage details related to your child’s care. Your case manager coordinates your child’s transition from hospital to home.