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Living With Cystic Fibrosis

If you or your child has cystic fibrosis (CF), you should learn as much as you can about the disease. Work closely with your doctors to learn how to manage CF.

Ongoing Care

Having ongoing medical care by a team of doctors, nurses, and respiratory therapists who specialize in CF is important. These specialists often are located at major medical centers or CF Care Centers.

The United States has more than 100 CF Care Centers. Most of these centers have pediatric and adult programs or clinics. For more information about CF Care Centers, go to the Cystic Fibrosis Foundation's Care Center Network Web page.

It's standard to have CF checkups every 3 months. Talk with your doctor about whether you should get an annual flu shot and other vaccines. Take all of your medicines as your doctor prescribes. In between checkups, be sure to contact your doctor if you have:

  • Blood in your mucus, increased amounts of mucus, or a change in the color or consistency of your mucus.
  • Decreased energy or appetite.
  • Severe constipation or diarrhea, severe abdominal pain, or vomit that's dark green.
  • A fever, which is a sign of infection. (However, you may still have a serious infection that needs treatment even if you don't have a fever.)

Transition of Care

Better treatments for CF allow people who have the disease to live longer now than in the past. Thus, the move from pediatric care to adult care is an important step in treatment.

If your child has CF, encourage him or her to learn about the disease and take an active role in treatment. This will help prepare your child for the transition to adult care.

CF Care Centers can help provide age-appropriate treatment throughout the transition period and into adulthood. They also will support the transition to adult care by balancing medical needs with other developmental factors, such as increased independence, relationships, and employment.

Talk with your child's health care team for more information about how to help your child move from pediatric care to adult care.

Lifestyle Changes

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

For example, follow a healthy diet. A healthy diet includes a variety of fruits, vegetables, and whole grains. Talk with your doctor about what types and amounts of foods you should include in your diet.

Other lifestyle changes include:

  • Not smoking and avoiding tobacco smoke
  • Washing your hands often to lower your risk of infection
  • Exercising regularly and drinking lots of fluids
  • Doing chest physical therapy (as your doctor recommends)

Other Concerns

Although CF requires daily care, most people who have the disease are able to attend school and work.

Adults who have CF can expect to have normal sex lives. Most men who have the disease are infertile (unable to have children). However, modern fertility treatments may help them.

Women who have CF may find it hard to get pregnant, but they usually can have children. If you have CF, you should talk with your doctor if you're planning a pregnancy.

Although CF can cause fertility problems, men and women who have the disease should still have protected sex to avoid sexually transmitted diseases.

Emotional Issues

Living with CF 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.

Joining a patient support group may help you adjust to living with CF. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center.

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.

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Cystic Fibrosis 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 Cystic Fibrosis, 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.

 
December 26, 2013 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.

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