Living with Cystic Fibrosis

The lungs of CF patients are a battleground between bacteria and immune cells. For many, it’s a daily struggle to breathe – sometimes necessitating lung transplants or using permanent oxygen tanks. Thick and sticky mucus in the airways can lead to infections and blockages that may result in permanent lung damage and premature death. When mucus builds up in the pancreas’ small ducts that provide digestive enzymes, food cannot be adequately digested, leading to malnutrition. It is common for patients to experience frequent infections and growth issues in early childhood.

Without treatment, many CF patients die in infancy. A dire warning has been circulating since the 1800’s: “Woe to the child which when kissed on the forehead tastes salty. He is bewitched and soon must die.”

There is no cure for CF. CFTR modulators are hailed as a “miracle,” transforming the illness into a chronic, manageable condition.