Des Moines Teen On What It's Like to Have Cystic Fibrosis

Dec 4, 2018

Cystic Fibrosis is a progressive, genetic disease that causes persistent lung infections and makes it harder to breathe over time. It causes a sticky buildup of mucus in the lungs, and also in the pancreas and other organs.

While the condition is difficult to live with, methods of treatment have improved vastly in the past few decades.

“When we think of cystic fibrosis (CF), we typically think of it as being traditionally a disease of children. Back in the 30s, 40s, 50s, and 60s, kids with CF would live months to years of their life,” says Dr. David Stoltz, pulmonologist and assistant director of the Adult Cystic Fibrosis Center at the University of Iowa. “We’ve now reached an important milestone for CF in that over 50 percent of people living with CF are adults.”

On this edition of Talk of Iowa, Charity Nebbe talks with Stoltz as well as Elise Free and her daughter Addie, of Des Moines. Addie is 13-years-old and was diagnosed with cystic fibrosis when she was four months old.

Elise says that there's been a lot of talk about a cure in Addie's 13 years of life.

"When she was born one of the nurses said, ‘By the time she’s five, there’s gonna be a cure.’ And I remember her fifth birthday party and her blowing out candles, and thinking, we’re not there yet."

While Elise recognizes that, "it's never a good time to have CF," she says that the research happening right now gives families a lot of hope.

"We probably will see a cure, ultimately," says Stoltz, "which could come from strategies like gene therapy. The gene for CF was identified in 1989, and it was thought shortly thereafter that this would be an ideal disease that gene therapy may work for. [...] I think if we’re going to go towards a cure, that’s going to be one of the key approaches."

Later in the hour, Nebbe sits down with the retiring director of the Iowa City Public Library, Susan Craig. Craig was hired as a full time librarian at the Iowa City Public Library in 1977, and she became the director of the library in 1994. They look back over Craig’s long career and discuss how she’s seen her library and other libraries evolve over that time.