While there’s no cure for cystic fibrosis, medical advances have extended—and greatly improved—the lives of the 30,000 American children and adults who have the genetic disease. Today, the median predicted age of survival is the mid-30s, far longer than it was when Jennifer Gold was first dubbed a poster child for the disease.
In people with CF, a protein that regulates salt balance in the cells doesn’t work the way it’s supposed to. As a result, the thin layer of mucus that protects cells thickens, clogging the lungs and blocking digestion of food. Treatments include chest vibrations to loosen mucus in the airways and supplements to break down food. Right now, over two dozen new medicines are in development. “It’s very exciting,” says Dr. Robert J. Beall, president of the Cystic Fibrosis Foundation. “If we can keep people from declining, we may be able to extend their lives for decades.”