About Cystic Fibrosis


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About Cystic Fibrosis:

Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe.

In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.

 

Symptoms of CF:

People with CF can have a variety of symptoms, including:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections including pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth or weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty with bowel movements
  • Male infertility

Cystic fibrosis is a genetic disease. People with CF have inherited two copies of the defective CF gene -- one copy from each parent. Both parents must have at least one copy of the defective gene. People with only one copy of the defective CF gene are called carriers, but they do not have the disease. Each time two CF carriers have a child, the chances are:

  • 25 percent (1 in 4) the child will have CF
  • 50 percent (1 in 2) the child will be a carrier but will not have CF
  • 25 percent (1 in 4) the child will not be a carrier and will not have CF

The defective CF gene contains a slight abnormality called a mutation. There are more than 1,800 known mutations of the disease. Most genetic tests only screen for the most common CF mutations. Read more about diagnosis.


In the United States:

  • About 30,000 people are living with cystic fibrosis (70,000 worldwide).
  • Approximately 1,000 new cases of CF are diagnosed each year.
  • More than 75 percent of people with CF are diagnosed by age 2.
  • Nearly half of the CF population is age 18 or older.


About the Cystic Fibrosis Foundation:

The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.

The CF Foundation’s mission is fueled by a dedicated group of scientists, caregivers, donors, volunteers and people with CF and their families who are united by a common goal: to find a cure for this devastating disease and help those with CF live longer, healthier lives.

The CF Foundation funds more innovative, groundbreaking CF research than any other organization in the world.It has invested hundreds of millions of dollars into CF research and drug development. The results of these bold investments have been astonishing. Because of the CF Foundation’s efforts, people with cystic fibrosis are living longer, healthier lives and pursuing dreams they never before thought possible.To learn more about the strides being made toward a cure for CF and about the programs and resources available to people with CF and their families, please visit, www.cff.org.


Cystic Fibrosis Foundation’s Infection Prevention and Control Policy:


IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:

To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow and maintaining a safe 6-foot distance from anyone with a cold or infection.

Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function. To further help reduce the risk of cross-infection, the Foundation’s attendance policy recommends inviting only one person with CF to an indoor Foundation-sponsored event at a specific time.

Despite this policy, individuals with CF might choose to attend events without informing the CF Foundation or without the Foundation’s knowledge. If so, they do so at their own risk. The Foundation accepts no responsibility for any risk to health involved in attendance, or in any social contact between persons with CF. For more information, please visit www.cff.org.