Frequently Asked Questions about CFF

What is cystic fibrosis?

Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage.

Mucus also can block the digestive tract and pancreas. The mucus stops digestive enzymes from getting to the intestines. The body needs these enzymes to break down food, which provides important nutrients to help people grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with medicine they take with their meals and snacks, which helps them digest food and get proper nutrition.

How do people get cystic fibrosis?

Cystic fibrosis is a genetic disease. That means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body's cells, control cell function by serving as the blueprint for the production of proteins.

To have cystic fibrosis, a person must inherit two copies of the defective CF gene—one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene, but do not have the disease themselves), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

Who gets cystic fibrosis?

Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races.

The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections, like pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth/weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements
  • Small, fleshy growths in the nose called nasal polyps

New research shows that the severity of CF symptoms is partly based on the types of CF gene mutations (defects) a person with the disease has. There are more than 1,400 different mutations of the CF gene.

How can people help to advance science/research/support?

Cystic fibrosis research is a team effort. Scientists across the world are working to understand and beat this complex disease, with the hope that one or more of the many approaches to therapies will lead to a cure.

You can help advance CF research in several ways:

  1. Make a Donation – Money buys science and science buys life.
  3. Contact your local CF Foundation chapter and volunteer. Learn about the many special events that raise the money to keep the science moving ahead!
  4. Become an Advocate and raise awareness – help educate your elected officials about CF.