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May is Cystic Fibrosis Awareness Month 

Cystic fibrosis (CF) is a genetic condition that affects around 40,000 people in the U.S. and approximately 100,000 worldwide. It causes the body to produce thick, sticky mucus that can clog the lungs and digestive tract, leading to chronic respiratory infections, digestive problems, and other complications.

CF and peripheral neuropathy: a hidden risk

Many people don’t realize that those with CF have an increased risk for developing peripheral neuropathy (PN)—a condition that affects the nerves outside the brain and spinal cord. PN can cause pain, numbness, muscle weakness, and digestive issues.

Why does CF increase PN risk?
  • Diabetes: Up to 50% of adults with CF develop diabetes, the #1 cause of PN in the U.S.
  • Vitamin Deficiencies: CF often impairs the body’s ability to absorb essential nutrients like vitamins E, B12, and folate, which are crucial for nerve health.
  • Digestive Complications: Poor absorption due to pancreatic insufficiency can directly contribute to nerve damage.
Key Facts About CF
  • Newborn Screening: Early detection through newborn screening is now standard in most U.S. states and is key to better outcomes.
  • Genetic: CF is inherited and most common in white people of Northern European descent, though it can affect people of all races. In non-white populations, it’s often diagnosed later, which can worsen outcomes.
  • Multi-System Disease: CF affects the lungs, pancreas, and other organs. It causes chronic breathing issues, frequent lung infections, malnutrition, and fertility problems.
  • No Cure (Yet): There’s no cure, but treatments continue to advance. CFTR modulators—newer drugs that improve the function of the faulty CFTR protein—are transforming lives.
  • Improved Life Expectancy: In the 1980s, people with CF rarely lived beyond 12 years old. Today, the average life expectancy for those who reach adulthood is around 44 years.
Early detection makes a difference

Early diagnosis of cystic fibrosis doesn’t just improve lung and digestive health—it can also help prevent long-term complications like peripheral neuropathy. By identifying CF early, individuals can better manage the risks that cause nerve damage before it happens. This is why awareness and timely testing are so important—especially in populations where diagnosis is often delayed. The sooner CF is identified, the better the chances of protecting nerve health and improving overall quality of life.

Help improve the lives of those with PN. Your contribution helps us support research and provide an improved quality of life for those affected.