WHAT IS CYSTIC FIBROSIS?

Cystic fibrosis is a progressive, genetic disease

that impacts multiple organs in the body including the

lungs, pancreas, digestive system, liver and more.

  • What happens in cystic fibrosis is normal bodily fluids, or secretions, become sticky and thick leading to blocked pathways in the lungs, pancreas and other organs. Over time, this can lead to breathing difficulties, recurring infections, malabsorption, organ dysfunction and more. 

  • CF can affect anyone - no matter their age, race or gender. There’s over 40,000 people in the U.S. living with CF and 105,000 globally.

  • CF management looks different for everyone, but can include inhaled breathing treatments, antibiotics, medications, airway clearance methods, hospital stays and lifestyle factors including diet and exercise. 

  • The prognosis for CF has changed drastically with the introduction of medical breakthroughs such as CFTR modulators, medications which help target the underlying cause of CF. Once considered a terminal childhood disease, over half of the CF population is now over the age of 18.

  • While there’s no cure, many are expected to live longer, healthier lives. 

  • 10% of the CF population currently doesn’t qualify for the breakthrough CF meds, and work is currently underway in labs and organizations across the U.S. to find universal treatment options so no one gets left behind.

Understanding cystic fibrosis

in the new era of longevity.

The CF population is currently rewriting their stories thanks to medical breakthroughs that have extended their lives. Once the main character, CF now has to compete alongside courageous dreams and new challenges that have arisen as they navigate a full life. 

Cystic fibrosis is now… managing a disease alongside vibrant careers, growing families, newfound adult responsibilities, exciting adventures and evolving identities.

And it comes with a whole new set of challenges, ranging from finances to body image, purpose uncertainty, changing relationships and more.

As the CF population navigates the brand new path of long-term planning and adulthood, your support matters more than ever. 

our work isn’t done

How You Can Help: