Living with Cystic fibrosis
Information, shared experiences and research connections for people living with cystic fibrosis and those who support them.
Understanding Cystic fibrosis
It is caused by changes in the CFTR gene; with advances in newborn screening, medicines, nutrition and care, many people with CF now live well into adulthood.
Signs & symptoms
Signs vary: some people have few symptoms, while others have more serious problems.
- Frequent lung infections
- Coughing and blocked airways
- Trouble gaining weight or growing
- Trouble absorbing food because the pancreas makes too few enzymes
- Sinus problems
- Fertility problems in men
Tell your care team about new or changing symptoms.
Diagnosis
- 1Newborn screening
All newborns in the United States are tested for CF using a small heel-prick blood sample.
- 2Sweat test
A sweat chloride test, the standard test for CF, checks for high levels of chloride in sweat.
- 3Genetic testing
Testing for CFTR gene changes can help confirm a diagnosis and can also show whether someone is a carrier.
Care & treatment
- Treatment
- Airway clearance and medicines such as antibiotics, mucus thinners and CFTR modulators help protect the lungs; modulators work for certain gene changes.
- Nutrition
- A personalized food plan with regular nutrition check-ins helps meet your energy needs.
- Monitoring
- Regular checkups with a CF care team track growth, weight and lung function.
Discuss benefits, risks and follow-up with your care team.
Everyday life
Daily routines and good records help you and your team.
- Keep track of your airway clearance routine and how your breathing feels.
- Note when breathing or other symptoms suddenly get worse, and tell your team quickly.
- Keep an up-to-date list of your medicines and any changes.
You are more than your diagnosis
Perspectives from people navigating life with Cystic fibrosis.
Explore research for Cystic fibrosis
Explore actively recruiting Cystic fibrosis studies with HealthSpark.
Find actively recruiting studies for Cystic fibrosis with HealthSpark. Share your city to explore research near you.
- Phase 3 studies first, with nearest research center
- Study information from ClinicalTrials.gov
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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