What You Can Do!

The CF Foundation and care centers are working hard to improve healthcare quality. However, we need your help. Research has shown that if you are more involved in your healthcare, you can get better results and feel more satisfied with that care. Here are some simple things you can do:

  • Ask questions, and keep asking them until you understand the answers. Many people are involved in your or your child’s care. So, talk with your CF care center often and get your questions answered.

  • Tell your CF care center about all of the medicines you take. Be sure to include nutritional supplements, herbal supplements, over-the-counter drugs, vitamins and prescription drugs from other doctors or previously prescribed at your care center.

  • Read the label on your prescription when you get your medicine. Make sure you are getting what your doctor ordered. For example, is it the right brand of enzymes?

  • Work with your CF healthcare team to agree on a plan for you or your child’s healthcare.

  • Know that “more is not always better.” Be sure to find out why you need a test or treatment and how it can help you.

  • When you or your child has an X-ray or laboratory test, do not assume that “no news is good news.” Ask when and how you will receive the results. Will it be in person, by mail or by phone? If you do not receive the results when you expect them, contact your CF care center and ask for them.

  • Ask your CF care center what the scientific evidence has to say about CF treatment options. You can find more information on this Web site or from PubMed, a service of the National Library of Medicine with more than 15 million medical and research documents.

Find a CF Foundation-accredited care center near you.

Updated 02/19/10