Cystic Fibrosis Program
Seattle Children’s takes a proactive approach to caring for children with cystic fibrosis (CF) so they can grow up as healthy and active as possible. What this means is that we see your child regularly, monitor symptoms closely and provide education. It also means that we use the latest therapies and medicines to help your child stay well and slow the progression of the disease. Our team of specially trained doctors, nurses, dietitians, respiratory therapists and other providers works with your family to develop individual care plans that are best for your child.
About Cystic Fibrosis
Cystic fibrosis is a chronic disease that affects approximately 30,000 children and young adults in the United States. One in 3,700 children is born with CF. This genetically inherited disease produces thick mucus that makes breathing difficult, causes lung infections and prevents normal digestion. Cystic fibrosis is considered a life-shortening disease, but advances in care have increased the median (middle of the age range) of survival to more than 38 years. About half of people with CF will live less than 38 years and half will live longer than 38 years.
Why choose Seattle Children’s?
The experts you need are here
Seattle Children’s uses a multidisciplinary approach to provide care to our more than 200 CF patients. We bring together pulmonologists (lung doctors), gastroenterologists (digestive system doctors), dietitians, respiratory therapists and other pediatric specialists who have a vast amount of knowledge about symptoms, medicines, airway clearance techniques and the latest research on the best CF care.
- Many members of our team are nationally recognized for their work in both clinical care and research.
- We are one of more than 110 CF centers nationwide that are accredited by the Cystic Fibrosis Foundation based on our specialized care, our participation in research and the education we offer community providers.
- We have affiliate centers in Spokane, Tacoma and Anchorage and collaborate with the University of Washington Adult Cystic Fibrosis Center.
We partner with your child and family
We see families for many years because CF is a lifelong disease. We treat you and your child as partners every step of the way. We listen to your concerns and work with you to make choices about medicines, diet, exercise and other therapies that work best for you and your child. We take into account the social, emotional and cultural needs of the whole family. The team provides friendly and compassionate service that is tailored to the needs of each patient and family.
We offer advanced treatments
Seattle Children’s has been an international leader in cystic fibrosis research for 25 years. Drs. Bonnie Ramsey and Arnold Smith developed the breakthrough therapy TOBI (tobramycin inhalation solution). TOBI is an inhalable form of the antibiotic tobramycin that is now a standard treatment for lung infections in CF patients. Ramsey also led a clinical trial that helped confirm the drug ivacaftor improves lung function in some CF patients. Marketed as Kalydeco, it is the first drug to treat the underlying cause of the disease at the cellular level. Your child may be eligible to participate in a current clinical trial of a new therapy as we continue to study cystic fibrosis and turn our discoveries into better care.
Lifelong care for your child
Our doctors also partner with the University of Washington, where there is an adult CF program. As we care for your child, we teach them the self-care skills they’ll need to transition to adult care, such as managing their medicines, maintaining healthy diets and filling their own prescriptions.
Medical Services We Provide
Child life specialists work directly with your child to help them express concerns and feel more in control about their hospital experience. They teach children coping skills to ease the stress of throat swabs, blood draws and other uncomfortable procedures that are part of treating CF.
Children with CF have trouble absorbing calories from fat. Our registered dietitians help families make meal choices that provide your child with the nutrition they need for healthy growth and development.
Research shows children with CF who exercise often have milder symptoms and a slower decline in lung function. Our athletic trainer offers fitness evaluations and personalized exercise guidance.
Our respiratory therapists teach children techniques to clear mucus from their lungs. They also teach children how to use nebulizers to inhale medicines.
Our social workers help you deal with the effects of your child’s illness on your family. They can assess your family’s strengths and weaknesses in relation to your child’s care, develop a plan to meet your family’s psychological and social needs and make referrals to community resources.
Cystic fibrosis is an inherited disease. Both parents of children born with CF are carriers of the disease, but may or may not know it or have it themselves. Our genetic counselors help parents and children understand CF inheritance patterns, explain genetic tests and review family planning options.
Scheduling an Appointment with the Cystic Fibrosis Program
- If your child has already been diagnosed, call the Cystic Fibrosis Program at 206-987-2024.
- If your child has not yet been diagnosed, call the Pulmonary Medicine Clinic at 206-987-2174.
- If you already have an appointment, learn more about how to prepare.
- Learn about Cystic Fibrosis Program resources such as useful links, videos and recommended reading for you and your family.