Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have enhanced and extended the life expectancy for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s, and beyond.

According to the CFF Patient Registry, in the United States:

  • More than 30,000 people are living with cystic fibrosis (more than 70,000 worldwide).

  • Approximately 1,000 new cases of CF are diagnosed each year.

  • More than 75% of people with CF are diagnosed by age 2.

  • More than half of the CF population is age 18 or older.

Chances of Having Cystic Fibrosis

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 1,700 known mutations of the disease. Most genetic tests only screen for the most common CF mutations. Therefore, the test results may indicate a person who is a carrier of the CF gene is not a carrier.

Treatments for CF

Our Cure CF Kids go through at least a couple of hours of treatments each day.

Airway Clearance

Airway clearance helps loosen and get rid of the thick mucus that can build up in the lungs. Some airway clearance techniques require help from family members, friends, or respiratory therapists. Many people with CF use an inflatable vest that vibrates the chest at a high frequency to help loosen and thin mucus.

Inhaled Medicine

Inhaled medicines are also used to treat CF. They can open the airways or thin the mucus. These are liquid medicines that are made into a mist or aerosol, then inhaled through a nebulizer. These medicines include antibiotics to fight lung infections and therapies to help keep the airways clear.

Supplements

Many people with CF take pancreatic enzyme supplement capsules to improve the absorption of vital nutrients. These supplements are taken with every meal and most snacks. Along with this supplement, they also usually take multivitamins to build their immune system to help fight this disease.

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