Treating and Managing Primary Ciliary Dyskinesia

How PCD Is Treated

There is no specific treatment to help the cilia work properly, so treatment for PCD usually focuses on improving lung function and limiting disease progression. Antibiotics can be used to address lung or sinus infections. Airway clearance methods that include breathing and coughing techniques need to be done frequently to help the lungs stay clear.

Chest physical therapy, which involves pounding on your chest or back over and over with your hands or the use of a device to loosen the mucus from your lungs so you can cough it up, can be done with the help of a specialist.

When symptoms are more severe, 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 the hospital, you will likely receive airway clearance with physical therapy. How often this occurs varies from person to person—from once every few years for mild PCD to a few times with year for more severe cases.

Occasionally, even with the best of care, PCD may lead to severe lung disease that needs more intensive treatment. Oxygen treatment might be needed at night or during exercise. With very severe disease, breathing assist devices might be needed, and if the lungs are failing badly, doctors might suggest an assessment for lung transplantation. While few patients with PCD go on to need a lung transplant, it can be effective in appropriate patients.

Managing PCD

For people living with PCD, it is very important to take care of your overall health. This includes eating a healthy diet and exercising regularly. If you are a smoker, quitting smoking will slow the worsening of your disease. The severity of PCD can vary greatly from person to person so it is important to work with your doctors so they can monitor your condition. This may include follow-up appointments and regular breathing and sputum tests to look for infections. Practicing regular effective airway clearance or chest physical therapy is also important.

Being diagnosed with a chronic disease such as PCD can be very stressful. Along with physical management, it is important to see a mental health professional or join a support group to manage any anxiety or depression you may feel.

Other Resources:

  • PCD Foundation maintains a patient registry and a list of specialty clinics

Finding Support

The Lung Association recommends PCD 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.

Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel.

Page last updated: March 12, 2020

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