Cystic fibrosis is a chronic, lifelong disease that requires regular treatment to maintain health. One of the best ways to stay healthy includes working closely with your care team at your CF care center.
The standard of care for people with CF is laid out by the Foundation in its clinical practice guidelines. The guidelines describe the basis of CF care, including:
- How often people with CF should visit the clinic
- What should be done when at clinic, including lab tests and pulmonary function tests
The guidelines also list issues that should be talked about while in clinic, including nutrition and lung health.
On this page:
Infant Care
Thanks to newborn screening, many infants are now being diagnosed with CF before obvious symptoms appear. The care guidelines describe preventive care for babies who screen positive for CF. They include:
- What should be done during the first year of visits to a CF care center
- How to diagnose and treat pancreatic insufficiency
- Best nutrition for your infant, including vitamins and mineral supplements
- Ways to promote healthy eating habits
- Learning about and starting airway clearance techniques
- The importance of immunizations, including the influenza vaccine for babies at least six months old
Care Guidelines
Information for People with CF and their Families
Information on the following topics, as well as other resources, can be found on the CF Foundation's Web site:
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CFTR Metabolic Syndrome (CRMS)
The results of a newborn screening test may be uncertain, meaning the infant may or may not have CF. The Foundation provides care guidelines on how best to care for infants with an unclear newborn screening test. The guidelines cover:
- Diagnosing CRMS
- Working with primary care provider
- Recommendations for a CF clinic visit
- Periodic exams for CF signs or symptoms
- Importance of immunizations, including the influenza vaccine for babies at least 6 months old
Care Guidelines
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Adult Care
The number of adults with CF is increasing. Although adults with CF do many of the same treatments as children with CF, there are other issues that adults face.
For example, adults may have CF-related diabetes, or bone disease. In addition, reproductive issues are an important consideration.
The Foundations guidelines on adult care cover the following topics:
- The transition from pediatric to adult CF care centers
- Family planning, fertility treatments and pregnancy care
- Alcohol use
- Screening for cancers
- Bone and joint disease
- Schooling and training after high school
- Career planning
- Insurance, disability benefits
- Discussing lung transplant, end-of-life options
Care Guidelines
Information for People with CF and their Families
Information on the following topics, as well as other resources, can be found on the CF Foundation's Web site:
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Updated 12/7/11
