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More facts

CF by the
Numbers

median life expectancy for CF patients
1 Years
Plus live with CF Worldwide
1
are diagnosed by the age of two
1 %
Pills a day on average!
1

FAQ

Most frequent questions and answers

Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.

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

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 (2 in 4) 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 type and severity of CF symptoms can differ widely from person to person. Therefore, although treatment plans can contain many of the same elements, they are tailored to each individual’s unique circumstances.

Each day, people with CF complete a combination of the following therapies:

  • Airway clearance to help loosen and get rid of the thick mucus that can build up in the lungs.
  • Inhaled medicines to open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol and then inhaled through a nebulizer and include antibiotics to fight lung infections and therapies to help keep the airways clear.
  • Pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. People with CF also usually take multivitamins. 
  • An individualized fitness plan to help improve energy, lung function, and overall health
  • CFTR modulators to target the underlying defect in the CFTR protein. Because different mutations cause different defects in the protein, the medications that have been developed so far are effective only in people with specific mutations.

Lipman is focusing on 65 stories in the book because that number is significant in the cystic fibrosis community.

The “65 Roses” story dates back to 1965 when an observant 4 year old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.”

Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.

Andy is 47 years young and thriving! Well past his life expectancy and he is not looking at going anywhere, anytime soon. 

To Learn more about cystic fibrosis, please visit the national Cystic Fibrosis Foundation’s website at cff.org.