Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
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Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
12 min read
Parents of children with cystic fibrosis may be anxious about whether a school or day care can accommodate their child's special needs. Students with CF may worry about being different from their peers. As a teacher, you can provide reassurance to both parents and students by working with them and CF health care professionals to maximize your student's overall learning experience, while helping to maintain his or her health.
6 min read
If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
Lisa C. Greene, M.A., CFLE
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Close to 40,000 people in the U.S. have cystic fibrosis, a rare genetic disease. The majority of people with CF are diagnosed by age 2 thanks to newborn screening tests. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make decisions about your health care.
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
Kimberly Houston, MSN, BSN, CPNP-PC