Cystic Fibrosis

For kids with cystic fibrosis (CF), every day is both a gift and a struggle. Atrium Health Levine Children’s is one of the nation’s Cystic Fibrosis Foundation-accredited care centers, and we help kids overcome the day-to-day challenges of living with CF. This way, they can lead longer, more fulfilling lives, from succeeding in school to finding meaningful work to starting a family.

Why Choose Levine Children's?

Here are just a few of the ways your child benefits from our pediatric cystic fibrosis care:

• Nationally accredited care center. We're nationally accredited by the Cystic Fibrosis Foundation, which means your family is guaranteed to get the highest level of care close to home. As an accredited care center, we have access to new, first-of-their-kind treatments as they become available. And you can rest assured we have the right members of your child’s care team, follow care guidelines and always work to enhance your child’s care.
• Child-focused care. Children with cystic fibrosis can be in and out of the hospital as they deal with managing their condition and infections. As a kid, it can be hard spending so much time away from home and other people. From our kid-friendly environment to child life specialists, our goal is to keep your child feeling as comfortable – and as much like a kid – as possible.
• Comprehensive care team. We have all the experts your child needs in one place, including pediatric pulmonologists, gastroenterologists, dietitians, respiratory therapists, registered nurses and social workers. We work together to build the best care plan for your child and help them navigate life with a chronic disease.
• Smooth transition to adult care. Atrium Health has accredited pediatric and adult cystic fibrosis programs, which means we can provide your child lifelong care. We’re dedicated to helping patients understand how to care for their condition at an early age, and as they get older, we help them seamlessly transition to our adult program.
• Growing research program. We’re developing a program to research new treatments, get breakthrough drugs approved and change the lives of our patients and their families.

About Cystic Fibrosis

Cystic fibrosis is a rare, lifelong lung disease that causes the body to produce very thick mucus, which can clog the lungs and make it difficult to breathe. It affects everything from the lungs to the digestive system and can lead to infections and lung disease as kids get older. Fortunately, with the right care – plus a partnership with an accredited CF program – children with cystic fibrosis can grow up to live long, productive lives.

Treating Cystic Fibrosis

Cystic fibrosis requires complex, consistent treatment, and our treatment plans are designed around your child’s unique needs.

Here are a few of the ways we treat cystic fibrosis:

• Medications, including pancreatic enzymes, special vitamins, inhaled bronchodilators, inhaled and oral antibiotics, and other inhaled medications
• Airway clearance techniques (ACTs), such as high-frequency chest wall oscillation (the vest) and other devices
• Well-balanced diet with extra calories, fat and salt
• Exercise
• Cystic fibrosis modulators, or drugs that target the basic defect causing CF

In general, only a few children with CF will need lung transplantation. If your family is considering a lung transplant, we’re here to help you make that tough decision. We have close relationships with top facilities, and we’ll make sure your child gets the care they need, as close to home as possible.

Patient Support Resources

Here are a few other resources available to kids with cystic fibrosis and their families:

• Charlotte Family Advisory Board, or FAB, is a group of CF parents, caregivers and patients who educate, empower and support families like yours every step of the way.
• Social workers, who care for your family and every aspect of this disease at Levine Children’s. They make sure your child gets the support they need at school and help your family find financial resources. Our social workers, in collaboration with the FAB, even offer educational events at Levine Children’s Hospital for families and caregivers of children with CF to learn from each other.
• Dietitians, who are specially trained to care for children with cystic fibrosis and help them maintain good nutritional health.
• A nurse navigator, who helps you and your child coordinate care in our cystic fibrosis center and with other specialties, including gastroenterology; endocrinology; and ear, nose and throat.
• Cystic Fibrosis Foundation, or CFF, whose website has useful, up-to-date information for cystic fibrosis patients.

Patient Stories and More

Cystic fibrosis can feel isolating for kids and their families. At Levine Children’s, we want you to know you’re never alone – we’re always here for you, and so are other CF families who know exactly what you’re going through.

Learn about a family like yours, and see why they chose Levine Children’s for care:

• For Kids with Cystic Fibrosis, Every Day is a Struggle and a Blessing
• Life With CF: Palmer’s Fight for a Better Future

See one physician’s take on a movie featuring CF patients:

• Hollywood or Real Life? – CF Physician Gives Review of ‘Five Feet Apart’

To learn more about cystic fibrosis care at Levine Children’s, contact us at 704-381-8840.