Cystic Fibrosis Program
Seattle Children’s takes an active approach to caring for children with cystic fibrosis (CF) so they can grow up as healthy as possible. We see your child regularly, closely monitor symptoms and provide education. We use the latest treatments to help your child stay well and slow the progression of the disease.
Our team of specially trained doctors, nurses, dietitians and respiratory therapists works with your family to create an individual care plan that is best for your child.
What is cystic fibrosis?
Cystic fibrosis is a lifelong (chronic) disease that affects glands throughout the body. It mostly affects the lungs and the pancreas. The condition makes it difficult to breathe, causes lung infections and prevents normal digestion.
One in 3,000 to 4,000 children born in the United States has CF. It is an inherited disease that currently affects about 30,000 children, teens and young adults nationwide.
Why choose Seattle Children’s Cystic Fibrosis Program?
Seattle Children’s Cystic Fibrosis Program is accredited as a Cystic Fibrosis Foundation Care Center. We have an experienced team of providers from different specialties dedicated to providing the care your child needs.
Although CF is considered a life-shortening disease, people with the condition are living longer. This is due to advances in care and a variety of treatment options. Up to the mid-1980s, people with CF rarely lived past their teens. Thanks to better treatment options — several of which were developed at Seattle Children’s — many patients now live into their 40s and beyond.
At Seattle Children’s, your family has a full team behind you, from diagnosis through treatment, follow-up and transition to adult care. From our appointment schedulers to our pediatric nurses, our team is specially trained to work with children and their families. Our facilities and equipment also reflect this kid-friendly, family-centered approach.
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. Our team considers the social, emotional and cultural needs of the whole family. We listen to your concerns and work with you to make choices about diet, exercise and treatments that work best for your child.
As your child grows, we will teach them the self-care skills they will need to transition to adult care, such as managing their medicines, maintaining healthy diets and filling their own prescriptions. We partner with the University of Washington Adult Cystic Fibrosis Center to help them make that transition to adult care.
Our team of experts focuses on how today’s treatments will affect your child as they develop and become adults. We base treatment plans on years of experience and the newest research on what works best – and most safely – for children, teens and young adults. This experience helps us monitor your child’s condition and work with you to decide the best treatment.
Many members of our team are recognized around the world for their work in both clinical care and research. We are 1 of more than 130 CF centers in the nation 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 and Tacoma, Washington, and Anchorage, Alaska. We also collaborate with the University of Washington Adult Cystic Fibrosis Center.
Seattle Children’s has been an international leader in CF research since the mid-1980s. We work closely with researchers at the University of Washington (UW), across the country and around the world on studies that are transforming the diagnosis, treatment and care of patients with CF.
This collaboration includes the CF Therapeutics Development Network (TDN), which Seattle Children’s and UW formed in 1998. This network now includes more than 90 centers across the country. Its mission is to ensure quality and safety in CF clinical trials and to speed up the development of new and better CF treatments.
Your child may be eligible to participate in a current clinical trial of a new therapy as we continue to study CF. Learn more about our CF research.
Services We Provide
At Seattle Children’s, our team in the Cystic Fibrosis Program will work with you to make a treatment plan that reduces or eases symptoms and promotes normal development and growth.
We will work with you to develop a treatment plan based on:
- Your child’s medical history, age and overall health
- How the disease affects their body
- Your child’s genetic change (mutation)
- How your child reacts to procedures and treatments
Services may include:
Research shows children with CF who exercise regularly have milder symptoms and better outcomes. Our athletic trainers will help your child develop an exercise routine.
CF is an inherited (recessive genetic) disease. This means both parents pass down 1 copy of a mutation (genetic change) to the cystic fibrosis transmembrane conductance regulator (CFTR) gene. People with 2 copies of CFTR gene mutations generally have CF. We will collect a small blood sample from your child to look for any changes in the CFTR gene.
Our genetic counselors will help you understand how CF is inherited, explain genetic tests and review family planning options.
We use a variety of medicines to treat your child’s symptoms. These may include:
- Antibiotics to treat infections
- Anti-inflammatories to reduce inflammation or swelling
- Bronchodilators to open up the airway passages
- CFTR modulator treatments, a type of medicine designed to correct the defective CFTR protein made by the CFTR gene
- Medicines to thin or hydrate mucus
- Pancreatic enzyme replacement therapy, a type of medicine that mimics the normal function of the pancreas
Children with CF have trouble absorbing calories, particularly from fat. Our registered dietitians will help you make meal choices that provide your child with the nutrition they need for healthy growth and development.
Our respiratory therapists will teach your child ways to clear mucus from their lungs. They will also teach your child how to use devices to help them inhale (breathe in) certain medicines.
We may recommend that you see another specialist, depending on your child’s treatment plan. Providers we commonly refer patients to include endocrinologists, gastroenterologists, otolaryngologists and psychologists.
Our social workers will help your child and your family cope. They will put you in touch with resources in your community.
Our Child Life specialists work directly with your child to help them express concerns and feel more in control of their hospital experience. They can teach your child coping skills to ease the stress of throat swabs, blood draws and other uncomfortable procedures that are part of CF treatments.
Scheduling an Appointment with the Cystic Fibrosis Program
- If you would like a referral to the Cystic Fibrosis Program, talk to your primary care provider. If you have a referral and your child has already been diagnosed with CF, call the Cystic Fibrosis Program at 206-987-2024 and choose option 1. If you have a referral and your child has not been diagnosed, call the Pulmonary Medicine Clinic at 206-987-2174.
- If you already have an appointment, learn more about what to expect and how to prepare.
- Learn about Cystic Fibrosis Program resources such as useful links, videos and recommended reading for you and your family.
Telemedicine at Seattle Children’s
You may be offered a telehealth (virtual) appointment. Learn more.
Participate in Research
You can help us answer questions about childhood health and illness and help other children in the future. Learn more about clinical trials and research studies at Seattle Children’s.
For more information, contact the Cystic Fibrosis Program at 206-987-2024. If you would like an appointment, ask your child’s primary care provider for a referral.
Providers, see how to refer a patient.
Paying for Care
Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.
Access Additional Resources
Get resources for patients and families, including information on food, housing, transportation, financial assistance, mental health and more.