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Living With Primary Ciliary Dyskinesia

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 doctors or your child's doctors to learn how to manage PCD.

Ongoing Care

You'll need ongoing care to check your lung function and your general health. Ask your doctor how often you should schedule followup visits.

Your doctor will likely recommend periodic chest x rays and lung function tests. He or she will use the test results and information about your symptoms to plan your treatment.

Make sure to report new or worsening symptoms, such as increased coughing, to your doctor right away. This will allow him or her to find out whether you have an infection and what's causing it. Your doctor can then prescribe medicine to prevent the infection from worsening.

Also, certain vaccines can lower your risk for some infections. Talk with your doctor about which vaccines may benefit you.

If your child has PCD, encourage him or her to learn about the disease and take an active role in his or her treatment.

Healthy Lifestyle

Between medical checkups, you can practice good self-care and follow a healthy lifestyle. An important part of a healthy lifestyle is following a healthy diet.

A healthy diet includes a variety of fruits, vegetables, and whole grains. It also includes lean meats, poultry, fish, beans, and fat-free or low-fat milk or milk products. A healthy diet is low in saturated fat, trans fat, cholesterol, sodium (salt), and added sugar.

For more information about following a healthy diet, go to the National Heart, Lung, and Blood Institute's (NHLBI's) Aim for a Healthy Weight Web site, "Your Guide to a Healthy Heart," and "Your Guide to Lowering Your Blood Pressure With DASH." All of these resources include general information about healthy eating.

Another important part of a healthy lifestyle is to quit smoking or not start smoking. Talk to your doctor about programs and products that can help you quit. Also, try to avoid secondhand smoke.

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.

For more information about how to quit smoking, go to the Health Topics Smoking and Your Heart article and the NHLBI's "Your Guide to a Healthy Heart." Although these resources focus on heart health, they include general information about how to quit smoking.

Other steps you can take to follow a healthy lifestyle include:

  • Washing your hands often to lower your risk of infection.
  • Being physically active and drinking lots of fluids. Talk with your doctor about what types and amounts of activity are safe for you or your child.
  • Doing chest physical therapy (as your doctor recommends).
  • Avoiding medicines that suppress coughing. (Coughing helps clear mucus from your airways.)

Other Concerns

Adults who have PCD can expect to have normal sex lives. However, men and women who have the disease may have fertility problems. ("Fertility" refers to the ability to have children.) Fertility treatments may help some people who have PCD.

If you have PCD and fertility concerns, talk with your doctor. He or she can advise you about available treatment options.

People who have PCD should still have protected sex to avoid sexually transmitted diseases.

Emotional Issues and Support

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

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

Genetic Counseling

You may want to consider genetic counseling if you have:

  • A family history of PCD and you're planning to have children
  • A child who has PCD and are planning to have more children

A genetic counselor can explain the risk (likelihood) of having children who have the disease. He or she also can help explain the choices that are available.

You can find information about genetic counseling from health departments, neighborhood health centers, and medical centers.

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Primary Ciliary Dyskinesia Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Primary Ciliary Dyskinesia, visit www.clinicaltrials.gov.

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Visit Children and Clinical Studies to hear experts, parents, and children talk about their experiences with clinical research.


 
June 01, 2011 Last Updated Icon

The NHLBI updates Health Topics articles on a biennial cycle based on a thorough review of research findings and new literature. The articles also are updated as needed if important new research is published. The date on each Health Topics article reflects when the content was originally posted or last revised.