As their peers deal with such issues as curfews, homework, and drivers’ licenses, teens with cystic fibrosis (CF) must cope with a host of more serious issues. Not only do these teens face the usual challenges of adolescence, they must also manage a strict regimen of medication, diet, and physical therapy.
Because CF heightens risk of infection, teens are isolated from those who could give them much-needed support: other teens with CF. But now, with help from EDC, they will be able to connect via the Internet.
“We are reproducing the benefits of a support group without the danger of cross-infection,” says EDC’s Walter Robinson. “The kids will have access to each other and be able to compare notes, helping them transition their treatment from ‘Mom and Dad do it’ to ‘I do it.’”
Sharing their stories
CF is a genetic disease that affects approximately 30,000 children and adults in the United States. Once fatal in early childhood, new treatments are enabling those with CF to live into their thirties and forties. Most follow a daily treatment that can include more than 40 pills and an hour and a half of physical therapy.
The teens (ages 13–15) will create short videos dealing with different aspects of managing their disease. The topics for the videos come from conversations with teens and their parents seeking treatment at Children’s Hospital Boston and Baylor University Medical Center in Dallas, and include subjects ranging from how to take medicine at school to dealing with overbearing parents. Each month, the teens will meet online to share and discuss the videos.
“The teens will be the teachers because they are the experts. All we ask is that they talk about their own experiences and have fun in doing it,” says Robinson.
This three-year project is funded by the U.S. Department of Health and Human Services, National Institutes of Health, National Institute of Child Health and Human Development.
Originally published on July 25, 2008