Facebook Page for Cystic Fibrosis Flourishing
Approximately 30,000 people in the United States have cystic fibrosis, yet the Facebook page for the Cystic Fibrosis Foundation has more than 60,000 fans. The Facebook page allows individuals with the disease to socialize without fear of contracting life-threatening infections, and it provides their families a way to get support and share information.
Cystic fibrosis is a rare genetic disease that is devastating not only because of the physical problems associated with the disease—frequent lung infections, shortness of breath, persistent coughing, poor growth—but also because it can be physically isolating. People who have this fatal disease are highly susceptible to lung infections and so must be extremely careful about exposing themselves to potentially infectious situations.
Fears of infection are nonexistent when people with cystic fibrosis socialize via the Facebook page. More than 95 percent of the fans of the Facebook page have the disease or have a family member or friend with the disease. Just one visit to the page reveals the depth of sharing and sense of community among the users.
The Cystic Fibrosis Facebook page also serves other purposes, including a way to disseminate the latest news about cystic fibrosis, information about treatments and legislation, and the latest about fundraising events. “It is another means for reaching current volunteers and donors—and for attracting new ones—to help bring us closer to our ultimate goal of curing cystic fibrosis,” notes C. Richard Mattingly, executive vice president and chief operating officer of the Cystic Fibrosis Foundation.
About 1,000 new cases of cystic fibrosis are diagnosed each year, and more than 70 percent of those diagnoses are made in children age two or younger. In past decades, individuals with cystic fibrosis rarely lived to attend elementary school. Today the median age of survival is more than 37 years, with some people living well into their forties.
The success of the Cystic Fibrosis Facebook page will help more people become aware of this genetic disease and, more importantly, enhance the lives of those who live with the disease.
Cystic Fibrosis Foundation