Primary Ciliary Dyskinesia Living With

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If you or your child has primary ciliary dyskinesia (PCD), try to learn as much as you can about the disease. Work closely with your healthcare providers to learn how to manage PCD. You will need ongoing care, such as lung imaging tests, to check how well your lungs are working.

PCD is a lifelong condition that can lead to serious problems, depending on how serious the condition is for you. Talk to your provider about your risk.

Possible health effects or problems from PCD include those listed below.

• Kartagener’s syndrome: This syndrome is a common health problem that affects people with PCD. It involves three disorders: chronic sinusitis, bronchiectasis, and situs inversus. Situs inversus is a condition in which the internal organs, such as the heart, stomach, spleen, liver, and gallbladder, are on the opposite side of the body from where they normally are.
• Repeated respiratory infections and pneumonia: This can lead to bronchiectasis.
• Fertility problems in men: PCD can affect the cilia-like structures that help sperm cells move. Because the sperm cells don’t move well, men who have the disease may have difficulty fathering children.
• Fertility problems in women: Women may have problems getting pregnant, likely because of faulty cilia in the fallopian tubes. (The fallopian tubes carry eggs from the ovaries to the uterus.)
• Respiratory failure: Frequent respiratory infections can damage your lungs and, over time, lead to respiratory failure.

Between medical checkups, you can practice good self-care and follow a healthy lifestyle.

• Quit smoking, or do not start. If you have a child who has PCD, avoid smoking anywhere your child spends time, including the home and car. Encourage your child to never start smoking. Visit Smoking and Your Heart and Your Guide to a Healthy Heart. Although these resources focus on heart health, they include basic information about how to quit smoking. For free help and support to quit smoking, you can call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).
• Choose heart-healthy foods. These include a variety of fruits, vegetables, whole grains, lean meats, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, cholesterol, sodium (salt), and added sugar.
• Wash your hands often to lower your risk of infection.
• Do chest physical therapy as your healthcare provider recommends.
• Avoid medicines that suppress coughing. Coughing helps clear mucus from your airways.
• Get regular vaccines. Talk to your or your child’s provider about which vaccines you may need to help lower the risk of some infections.

Living with PCD may cause fear, anxiety, depression, and stress. Talk about how you feel with your healthcare team. Talking to a professional counselor can also help. If you feel depressed, your healthcare provider may recommend medicines or other treatments that can improve your quality of life.

Support from family and friends can also help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.