Newly Diagnosed with Primary Ciliary Dyskinesia

Find Out More About Primary Ciliary Dyskinesia (PCD)

Being newly diagnosed with PCD can feel scary and overwhelming, so it’s important to take the following first steps:

• In addition to working with your primary care provider, request a referral for a pulmonologist and ear nose and throat (ENT) specialist as part of your care team.
• Work with your care team to seek appropriate treatment in a timely fashion.
• Learn how to recognize your symptoms and track them so you notice changes.
• Communicate any new symptoms or complications to your care team.
• Follow your healthcare provider’s instructions regarding follow-up appointments, tests, treatment and medications.

Take Care of Yourself

Since patients with PCD are at increased risk of chronic infections and long-term lung damage, it’s important to do what you can to stay as healthy as possible.

• Staying active and asking your healthcare provider if pulmonary rehab is right for you.
• Managing your weight, staying hydrated and following a healthy diet.
• Avoiding tobacco products and if you are a person that uses tobacco products, consider discussing a quit plan with your healthcare provider.
• Washing your hands often and avoiding large crowds to lower your risk of infection.

Connect With Others

Living with a chronic condition, like PCD, can take a significant mental load on you and your loved ones. There can be a lot of uncertainty about disease progression and the future. These aren’t feelings you have to cope with alone. There are both online and in-person support groups available where you can get support from others, learn more about your disease and feel empowered with new management strategies.

• Join a Living with Lung Disease Community (online support community)
• Join a Better Breathers Club (support groups offered virtually and in person)
• Join the Patient and Caregiver Network (online network that offers a variety of resources, education and lung disease management tools).

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 about primary ciliary dyskinesia and they can help connect you with support.