Life Expectancy

Right now, there is no cure for CF. Even if symptoms are mild at first, they get steadily worse over time.

But there is hope. Since researchers identified the gene that causes CF in 1989, they have tried to replace abnormal CF genes with normal ones. Some are working on finding the right method of delivering that normal gene into the cells of a person with CF. Other scientists are trying to find new ways of fighting lung infections and different ways of moving chloride in and out of cells, bypassing the defective CFTR protein. In some cases, lung transplants have extended the lives of people with CF.

In 1938, when cystic fibrosis was first described, more than 80% of patients died within one year of birth. In 1980, children with cystic fibrosis lived until the age of ten. By 1990, thanks to scientific breakthroughs including full lung transplants, children with cystic fibrosis lived into their late teens.

Today, The median age of survival for a person with CF is 33.4 years. As more advances have been made in the treatment of CF, the number of adults with CF has steadily grown. Today, nearly 40 percent of the CF population is age 18 and older. Adults, however, may experience additional health challenges including CF-related diabetes and osteoporosis. CF also can cause reproductive problems - more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term.

Sadly, many with cystic fibrosis still die in childhood. Whatever their life span is, the years allotted to those with cystic fibrosis are fraught with life-threatening medical crises, severe financial hardship, and incalculable emotional stress.

Two things are clear:

1) They can't count on an abundance of days.

2) We can make their every day count.