Primary Ciliary Dyskinesia and Bronchiectasis Clinic

Seattle Children’s Primary Ciliary Dyskinesia and Bronchiectasis Clinic offers complete services for diagnosing and managing primary ciliary dyskinesia (PCD) and other types of bronchiectasis in children and young adults.

The clinic is part of Seattle Children’s Pulmonary Program and includes a team of doctors, nurses and respiratory therapists committed to providing complete and compassionate care for your child. We work closely with experts in many of Seattle Children's clinics, including Otolaryngology, Audiology and Immunology. Cystic fibrosis, another cause of bronchiectasis, has a separate Cystic Fibrosis Program.

What is PCD?

Primary ciliary dyskinesia (dis-kie-nee-zhuh), also called PCD, is a rare genetic condition where the tiny hair-like cells lining the airways of the lungs (cilia) do not beat properly. The inactive cilia are unable to clear out germs, mucus and particles like dust from the lungs.

It is difficult to diagnose PCD because the symptoms are not specific. Most children with PCD had difficulty breathing at birth, which required oxygen or breathing support, and have developed lasting nasal drainage and wet cough that started within the first 6 months of life. PCD can lead to repeated sinus, ear and respiratory infections, as well as damage to the airways. Because these little hairs (cilia) are also in the inner ear canal and tubes that carry sperm, hearing loss and male infertility can also result.

Multiple tests are often needed to diagnose children or adults with PCD. These tests may include a combination of genetic testing, looking at cilia under the microscope and a simple test measuring nitric oxide in the nose, which is lower in people with PCD.

Many children with PCD need ear tubes, regular hearing screening or hearing aids. Currently, there is no cure or drugs specifically for people with PCD, but treatments such as airway clearance exercises, antibiotics, sinus rinses and ear tubes can help.

“When we learned our baby was born with an extremely rare disease that most people have never even heard of, I just wanted to shout it from the mountaintops. How can there be a fix to a problem that most people don’t know exists? I wanted to bring awareness to PCD.”

– Erin Fox, a parent of a child with PCD
Read how families raise awareness of rare, underdiagnosed lung disease.

What is bronchiectasis?

Bronchiectasis (bron-kee-eck-tuh-sis) is abnormal widening of the airways of the lung (bronchi) that can be seen on chest CT (computed tomography). It causes chronic cough, mucus production and frequent respiratory infections.

There are many causes of bronchiectasis, including:

• Genetic conditions (including primary ciliary dyskinesia)
• Problems with the immune system (reduced ability to fight infection)
• Past lung infections
• Problems with swallowing causing food or fluids to accidently be breathed into the lung

Resources for Patients and Families

You and your family may find helpful information on these links and patient handouts.

• Primary Ciliary Dyskinesia Foundation (PCD Foundation – Helping Those Affected by Primary Ciliary Dyskinesia)
• Pulmonary Function Testing in Children – American Thoracic Society
• Bronchiectasis – NIH

Scheduling an Appointment

If you would like a referral to the Primary Ciliary Dyskinesia and Bronchiectasis Clinic, talk to your primary care provider. How to schedule an appointment at Seattle Children’s.

Telemedicine at Seattle Children’s

We offer telehealth (virtual) appointments. Learn more.

Contact Us

For more information, contact us at 206-987-2174. If you would like an appointment, ask your child’s primary care provider for a referral.

Providers, see how to refer a patient.