Frequently Asked Questions

What is cystic fibrosis?

Cystic fibrosis (CF) is a life-threatening, genetic disease that primarily affects the lungs and digestive system. It is found in about 30,000 people in the United States (70,000 worldwide). People with CF inherit a defective gene that causes a buildup of thick mucus in the lungs, pancreas and other organs. 

When mucus clogs the lungs, it can become very difficult to breathe. The thick mucus also traps bacteria in the airways, which can result in infections and inflammation and often leads to severe lung damage, and eventually, respiratory failure. Respiratory problems are the most serious and persistent complication for people with CF.


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What are the symptoms of CF?


  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections, such as pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Frequent greasy, bulky stools or difficulty in bowel movements
  • Small, fleshy growths in the nose, called nasal polyps
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How do people get CF?

Cystic fibrosis is a genetic disease. People inherit CF from their parents through genes, which also determine many other characteristics, including height, hair color and eye color.

CF is caused by mutations in a gene that produces a protein, called CFTR. The CFTR protein controls the flow of salt and water in and out of the cells of organs like the lungs and pancreas.





Learn more about CF genetics and different CF mutations.

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Who gets CF?

About 30,000 children and adults in the United States (70,000 worldwide) have CF. An additional 10 million people — about one in every 31 Americans — are symptomless carriers of the defective CF gene. CF is most common in white people, but is found in people of all races and many ethnicities.

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How is CF diagnosed?



CF is usually diagnosed by conducting a sweat test, which measures the amount of salt in a person’s sweat. A mild chemical and a small amount of electricity are placed on the skin (usually on the arm) to stimulate the sweat glands. Sweat is then collected and the amount of chloride, a component of salt in the sweat, is measured. A high level of chloride means that the person has cystic fibrosis. The sweat test is painless.



Learn more about testing for Cystic Fibrosis.

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How is CF treated?



However, each day, most people with CF typically:




The CF Foundation supports research to discover and develop new CF treatments, and maintains a pipeline of potential therapies that target the disease from every angle.

The most recent drug approved for CF, Kalydeco™ (ivacaftor), treats the underlying cause of CF in a small group with a specific mutation of the CF gene. All other CF therapies available today treat the symptoms of CF.


Learn more about CF care and treatment.

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What is the life expectancy for people with CF?




Find resources especially for adults with CF.

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Is there a cure for CF?


In 2012, the U.S. Food and Drug Administration approved Kalydeco™ (ivacaftor) — the first drug to treat the underlying cause of CF in a small group of people with a specific mutation of the CF gene. In 2014, Kalydeco was approved for people ages 6 and older who have eight additional CF mutations.

It is too early say whether Kalydeco will be an actual cure for those who are taking it. However, the drug has shown that it is possible to target the defective CFTR protein that causes CF and improve key symptoms of the disease. Kalydeco is now being studied in combination with other potential therapies to treat people with the most common CF mutation.


We will not rest until we have a cure for all people with the disease, regardless of their mutation.

Learn more about CF drugs in development.

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How does CF affect the lungs?

In a healthy person, the CF gene makes a protein — known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator) — that is found in the cells that line different organs, such as the lungs and pancreas. The CFTR protein controls the movement of electrically charged particles, including chloride and sodium (components of salt), in and out of these cells.

In people with CF, the protein is defective and the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of bacteria becomes very thick and difficult to cough out. This thick mucus then clogs the airways and, without treatment, can lead to inflammation and infections that damage the lungs.

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Does a lung transplant cure CF?

No. A lung transplant will not cure CF because the defective gene that causes the disease is in all of the cells in the body, not only in the lungs.
While a transplant does give a person with CF a new set of lungs, the rest of the cells in the body still have CF and may already be damaged by the disease. There is also the risk that the body will reject the transplanted lungs, and the drugs that help prevent organ rejection may cause additional health problems.

Lung transplantations are serious and difficult procedures. But the growing success rate makes lung transplantation an important treatment option for some people with CF who have severe lung disease.

Learn more about lung transplants and CF.

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Can CF be treated with gene therapy?

In gene therapy, healthy genes are delivered into cells and tissues of the body to override the effects of defective genes. When the gene that causes CF was identified in 1989, there was much excitement that it would soon be possible to treat CF using gene therapy.

Scientists are currently exploring the use of gene therapy for many diseases, including CF, but have had little success. It has been very hard to find a safe and reliable way to deliver healthy genes into the body. Like all medicines, gene therapy must be shown to be safe and effective before it can be approved as a treatment.

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Where can people with CF get the best care?

Cystic fibrosis is a complex disease that affects many parts of the body. The best place to receive comprehensive CF care is at one of the more than 110 CF Foundation-accredited care centers nationwide, which specialize in treating CF.

People with CF need a team approach for all aspects of their care. In addition to the person with CF and his or her family, the CF care team includes specialists who work at the CF care center. The clinic team is headed by a physician and includes a program or clinic coordinator, nurse, dietitian, social worker and respiratory or physical therapist. Some care centers have other specialists on the care team, such as genetic counselors, pharmacists and psychologists.

To find a CF care center, visit our interactive care center map or call 1-800-FIGHT CF.

Many CF Foundation-accredited care centers also conduct clinical trials to study the latest potential treatments for CF. By volunteering to participate in a CF clinical trial, people with CF can actively help advance the search for a cure. 

Learn more about clinical trials testing potential new CF drugs and therapies.

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Are there programs or resources that help people pay for CF drugs and care?

The CF Foundation’s Patient Assistance Resource Center is an online information hub that links the CF community to numerous Foundation-supported assistance programs that offer individualized help. Through the Patient Assistance Resource Center, patients and families can:

  • Find financial assistance to help meet co-pay requirements for certain CF medications and medical devices.

  • Search an extensive online library of up-to-date materials to help people with CF, their families and CF care providers navigate the complex world of health insurance and coverage.

  • Contact the CF Legal Information Hotline, which provides free information about the laws that protect the rights of people with CF and is an invaluable resource for people with CF who are facing health care coverage or reimbursement challenges.

Learn more about these and other programs in the Patient Assistance Resource Center.

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How can I help support CF research and care?

Fighting CF is a team effort. Every day, people with CF and their families, health care professionals, researchers, donors and volunteers work together to advance the search for a cure and improve the quality of life for those with CF.

Real progress has been made in the quest to find a cure, but there is more work to be done. There are many ways you can help people with CF live longer and healthier lives:

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Updated: 3/12/2014