Primary ciliary dyskinesia in children

PCD is a rare and under-diagnosed genetic condition, likely occurring in 1 in 20,000 individuals in the United States. PCD results in a number of symptoms related to the abnormal motion of cilia (the tiny hair-like structures that line the respiratory tract and are found in other organ systems). Cilia play many roles in the body, including: organ arrangement during fetal development, filtration of the outside environment, and movement of secretions.

What are the signs and symptoms?

PCD patients generally have chronic nasal congestion, chronic, wet cough, and frequent sinus and chest infections. Children with PCD often have chronic plugged ears and may have undergone ear tube placement with persistent ear drainage. Patients with PCD may also have abnormal arrangement of their internal organs or infertility challenges.

About treatment for PCD at Children’s

Diagnosis of PCD requires a thorough evaluation and treatment is often overseen by a lung doctor. Our program combines the collaborative efforts of pediatric pulmonologists, pediatric otolaryngologists (ENT), geneticists, cardiologists, neonatologists, respiratory therapists, pulmonary technologists, pathologists and many support staff members.

We are pleased to be a part of the PCD Foundation’s Clinical and Research Center Network and are committed to improving the lives of those affected by PCD.

For questions or to make an appointment, contact a PCD specialist at Children’s Respiratory & Critical Care Specialists: 612-813-3300

Who treats PCD at Children’s?

Children’s Primary Ciliary Dyskinesia program brings together a multi-disciplinary group of specialists who are passionate about providing exceptional diagnostic and disease management for patients and families affected by Primary Ciliary Dyskinesia (PCD).

See below for a list of all the Children’s Minnesota Primary Ciliary Dyskinesia team members:

Jane Barthell, MD
Anastasia Ketko, MD

Pediatric Pathologist:
Megan Dishop, MD

Other PCD Team Members:
Geneticists: Renee Temme, MS CGC and Kayla Haas, MS
PCD Center Coordinator: Mary Sachs, APRN, CNP
Scheduling Coordinator: Sarah Bevin
Pulmonary Nurses: Rachel Smude, RN and Rachel Scholz, RN
Pulmonary Diagnostics: Kay Kufahl, RRT and Julie Griffin, RRT
Respiratory Therapist: John Plante, RRT
Social Worker: Tamara Vance, LICSW

Additional information

For more information, please visit the following websites:

PCD Foundation
Children’s Respiratory & Critical Care Specialists
Gunky Lungs & Bungee Boogers (Kids’ Guide to PCD)