Cystic Fibrosis
Cystic fibrosis (CF) is an inherited condition that affects the lungs, digestive system, and other parts of the body. Normally, our cells produce thin, slippery mucus, sweat, and digestive juices that help protect organs and keep things moving properly. CF makes the fluids thick and sticky, clogging the lungs and pancreas (an organ that helps with digestion).
Babies are tested for CF at birth, so most are diagnosed right away. Signs of CF include poor weight gain, coughing, repeated lung infections, trouble pooping, and large, smelly stools or diarrhea. A unique sign parents sometimes notice is that their child's skin tastes salty because of the extra salt in their sweat. Symptoms can be different from person to person and may come and go.
There is no cure. But improved treatments are helping people with CF live longer, healthier lives.
Frequently Asked Questions (FAQ)
How common is cystic fibrosis?
Cystic fibrosis is rare. About 1,000 people are diagnosed with it each year in the United States. It can affect anyone, but is most common in white people with Northern European ancestry.
What should I do if I suspect my child has cystic fibrosis?
Most babies are diagnosed through the newborn screenings, but not always. Because cystic fibrosis is less common in people of color and screenings don't pick up on every CF variant, they are more likely be diagnosed later. If you're worried, contact a medical provider, even if the newborn screening was negative. Early treatment makes a big difference.
What kind of help is there for cystic fibrosis?
Ways to manage CF usually include:
- A care team: This may include specialists, respiratory therapists who help with breathing, social workers, mental health providers, and your regular doctor.
- Lung care: Medicines, equipment, and airway-clearing therapies can help with breathing.
- Digestive support: Taking medicine with meals and snacks can help with digestion and weight gain. Vitamins and certain supplements may also be beneficial.
What other conditions are common in people with cystic fibrosis?
People with CF may develop other conditions such as diabetes, liver disease, arthritis, an enlarged spleen, and weak bones.
Talking with a Medical Provider
When talking with medical providers or specialists, you might want to:
- Bring and take notes: Keep a journal of symptoms, when they happen, and anything that seems to trigger them. Take notes during visits and ask for a summary before you leave.
- Ask questions like:
- "Who should be part of my child's care team?"
- "What support does my child need at home and school?"
- "How can we lower the risk of infections?"
What You Can Do at Home
CF care is lifelong. It may help to:
- Seek support: It's normal to feel sad, overwhelmed, and angry. Support groups are available online and in person for people with CF and their families.
- Be active: Regular physical activity can improve breathing, strengthen bones, reduce stress, and help prevent complications like diabetes and heart issues.
- Eat well: A high-calorie, high-fat diet, along with vitamins and minerals can help manage symptoms.
- Manage stress: Make time for fun activities with your child — and for yourself.
Learning about cystic fibrosis and getting help is a journey. You're not alone.
Go Deeper
Find Resources
Search New York State
Families, caregivers, youth, and community partners in New York State can use this searchable resource guide to find information, services, and support. ACT for Youth.
For Parents/Guardians and Educators
Parent Introduction to CF
This guide is a first stop for parents when CF is suspected. Cystic Fibrosis Foundation.
Educator Guidance
This guide for teachers includes insights that may also be helpful for other members of a child's school community. Cystic Fibrosis Foundation.
Teachers and Educators: Cystic Fibrosis
Here, find an overview of CF for parents and educators, as well as dietary tips and information on screening and genetic testing. Nemours.
Testing and Diagnosis
Testing Basics
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. Cystic Fibrosis Foundation.
Health Equity: Diagnosis Often Missed or Delayed
Delays in diagnosis can be dangerous. This article highlights the fact that higher rates of false negative newborn screenings occur among non-white infants. Children's Hospital of Chicago.
About This Series
This series of handouts and web pages on health conditions was written by clinicians in Weill Cornell Medicine's Pediatric Mental Health Integration Program, partners in the ACT for Youth CYSHCN Program Center of Excellence at Cornell University.
