April 10, 2025

Cystic Fibrosis Today


Cystic fibrosis (CF) is a genetic disorder that affects approximately 40,000 children and adults in the United States. The incidence of CF has been decreasing over the past 25 years. All children born in the United States are tested for CF at birth. Projections estimate around 515 new CF births in the U.S. in 2025. CF primarily impacts the respiratory, digestive and reproductive systems by causing the production of thick, sticky mucus that can obstruct airways and ducts. CF is a genetic disease in which a child has inherited a defective gene from both parents. About one in 35 Americans is an asymptomatic carrier of the gene. There are more than 1,800 known mutations of CF meaning people can have a wide range of symptoms, severity and side effects. CF affects people of every racial and ethnic group.

Symptoms in Children

The signs of CF in children can vary, but common symptoms include:

  • Salty tasting skin
  • Chronic coughing
  • Wheezing or shortness of breath
  • Chronic sinus infections
  • Frequent lung infections including bronchitis or pneumonia
  • Poor growth or weight gain in spite of a strong appetite
  • Greasy, bulky stools or constipation
  • Clubbing or enlargement of the fingertips and toes

Diagnosis

All infants born in the United States are tested for CF on their newborn screening which is done shortly after birth while in the hospital. Most individuals are diagnosed with CF by age 2; however those with mild symptoms may not be diagnosed until adulthood. Diagnosing CF is a multi-step process that includes:

  • Newborn screening (all 50 states have been testing for CF since 2010)
  • Sweat test
  • Genetic testing
  • Clinical evaluation at a CF Foundation-accredited care center

Treatment Approaches

While there is no cure for CF, advancements in treatment have significantly improved the quality of life and life expectancy for those affected. Therapies are tailored to manage and alleviate symptoms:

  • Airway Clearance Techniques: Methods such as chest physiotherapy help loosen and expel mucus from the lungs.
  • Medications: These include inhalers, antibiotics to combat infections and mucus-thinning agents.
  • Nutritional Support: – Enzyme supplements and specialized diets ensure proper nutrient absorption and address growth challenges.
  • Individualized fitness plans: Improve energy, lung function and overall health with tailored exercises.
  • 6 Foot Rule: It's important for people with CF to stay at least 6 feet away from others with CF and anyone with a cold, flu or infection. Germs can spread as far as 6 feet when someone coughs or sneezes, landing on surfaces or in another person's eyes, nose or mouth. Cross infection is especially serious for those with CF.

Mental Health

Living with a chronic disease, or being the parent of a child with CF causes a great deal of stress, anxiety and depression. People with CF have developed strong online communities via social media and video chatting to form connections. Protecting mental health is just as important as working to protect physical health. Never be afraid to ask for help.

Early diagnosis, comprehensive care and advancements in treatment have notably improved outcomes for children with CF. Continued research and support are essential to further enhance the lives of those affected by this condition. If you have concerns about your child’s health, talk with us at Goldsboro Pediatrics.

Sources:
Cystic Fibrosis 2023 National Indicator Report
American Lung Association
Cystic Fibrosis Foundation




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