CF is not just a lung disease

Cystic fibrosis is a rare, progressive, genetic disease that affects the lungs, pancreas, and other organs. Furthermore, CF is a complex disease and the types of symptoms and how severe they are can differ widely from person to person. Many factors can affect a person's health and the course the disease runs, including their age at diagnosis.

As people with CF live longer, their disease manifests in different ways, forcing them to confront new challenges related to life with CF, including infections, CF-related diabetes, gastrointestinal issues, reproductive health, and mental health.

CF is not contagious

Cystic fibrosis is a genetic disease that you are born with. It is caused by mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, resulting in dysfunctional CFTR protein. This leads to thick mucus buildup in the lungs, making it difficult to breathe and easy for germs to thrive. As a result, people with CF are more vulnerable to acquiring infections from others who are sick, particularly from others with CF. The Cystic Fibrosis Foundation's Infection Prevention and Control Guidelines help people with CF, their families, and caregivers reduce the spread of germs in everyday life.

Everyone who has cystic fibrosis is born with it

To have CF, you need two copies of a particular gene that does not function properly, one from each parent. Because CF is caused by your genes, you cannot catch CF like a cold or develop it over time. Most people with CF are diagnosed by age 2. But sometimes people do not learn that they have CF until they are older. This can happen for many reasons. For example, they may not have had newborn screening for CF, or may have a rarer form of CF with less typical symptoms. Also, CF can affect people of any race or ethnic group, but many people believe it only affects white people. This can cause delayed diagnoses for people of color.

Not all people with CF are diagnosed at birth 

While every baby in the U.S. has been screened for CF for more than a decade, each state has different processes for newborn screening. These variations include how well the screen performs in identifying newborns with CF, how soon after birth a screen is completed, when the results are reported, when follow-up is completed, and when treatment is initiated. All these variations can contribute to a missed diagnosis, ultimately leading to disparities in treatment, care, and outcomes over time.

Cystic fibrosis can affect people from any racial or ethnic background

Dorothy Andersen’s 1938 paper described cases of CF that had been reported from around the globe in people with different ethnicities. The misconception that it is a “white person’s disease” has led to some people of color getting diagnosed late or not being diagnosed at all. According to the 2024 Cystic Fibrosis Foundation Patient Registry, more than 15% of the registry’s participants self-identify as a person of color (Hispanic, Black, multiracial, Asian, or as other than white). Specifically:

• 10.3% of people identify as Hispanic
• 3.4% of people identify as Black or African American
• 2.2% of people identify as two or more races
• 0.6% of people identify as Asian

The Registry contains data from individuals diagnosed with CF who have consented to participate and were seen at a CF care center. While the Registry represents more than 80% of people with CF in the United States, it is not representative of the entire U.S. CF population, and it is believed that cases from people of color are underreported in the Registry.

CF is not solely a pediatric disease

In the years following the initial discovery of the disease in 1938, children with CF rarely made it to adulthood. But, in the past few decades, the cystic fibrosis population has changed. For a child born between 2020 and 2024, half are predicted to live to age 65 or beyond. According to 2024 Registry data, 61.6% of individuals with CF are adults.

Today, there are close to 40,000 people in the United States with CF, a number which has increased due in large part to more people living longer into adulthood. Evolutions in the multidisciplinary CF care model, advancements in research and treatments, and universal newborn screening have helped extend lives.

There is no cure for cystic fibrosis

CFTR modulators — therapies targeting defects in the CFTR protein that cause CF — are a tremendous advancement in treatment and have improved quality of life for many people with CF. However, they are not a cure, and not everyone can benefit.

There are more than 1,700 different mutations that cause CF. About 10% of people with CF have two rare mutations, around 2-3% of which might respond to CFTR modulators. The other approximately 7%, including the 3% with nonsense mutations, do not respond to modulator treatments. Moreover, there are some people who may clinically benefit from modulators but must alter the dosage or forgo them altogether because of the side effects.

For those who are eligible, CFTR modulators should be started as early as possible to avoid irreversible damage to organs. A lung transplant is another treatment option for some people with advanced CF lung disease. However, after the transplant, they will still have CF.