Living With Primary Ciliary Dyskinesia (PCD)
For the most part, people with PCD who are diagnosed relatively early and have proper care should live a long life with good quality.
What to Expect
PCD usually requires daily management, like most chronic disorders. The severity of PCD can vary greatly from person to person. The key is deciding whether you will manage or disease or the disease manage you.
Managing the PCD
Recurrent infections tend to be unpredictable, and usually need antibiotic treatment. In severe cases you might need antibiotics through an IV for a few weeks at a time. This can sometimes be done at home, but might mean a stay in the hospital. When in hospital, you will likely receive airway clearance with physical therapy. How often this occurs during a lifetime with PCD is unpredictable and varies from one person to another – this could be once every few years with mild PCD, to a few times with year with more severe disease.
It might be necessary to see an ear, nose and throat (ENT) doctor if sinus and ear problems are difficult to manage. Then, the doctor might recommend cleaning methods for the nose and sinuses ("nasal rinses") or even surgery. Some doctors recommend inserting tubes to drain the ear passages, but this is controversial, even among experts.. They are not usually needed in adults with PCD.
Occasionally, even with the best of care, PCD may lead to severe lung disease that needs more intense treatment. Oxygen treatment might be needed at night, or during exercise. With very severe disease, breathing assist devices might be needed to help with breathing, and if the lungs are failing badly, doctors might suggest an assessment for a lung transplantion. While few patients with PCD go on to transplant, it can be effective with very severe diseases.
The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community to connect with others facing this disease. You can also call the Lung Association's Lung HelpLine at 1-800-LUNGUSA to talk to a trained respiratory professional who can help answer your questions and connect you with additional support.
Ask your healthcare provider about lung disease support groups in your area, or look online for a Better Breathers Club near you.
This content was developed in partnership with the CHEST Foundation, the philanthropic arm of the American College of Chest Physicians.