DETROIT – There are days 26-year-old Emily Schaller can barely breathe because of cystic fibrosis — and playing in smoke-filled bars hasn't helped.
By day, Schaller is an employee at a retail store. By night, she's the drummer of Hellen, a Detroit-based rock band that hosts concerts to support CF research.
She was a whirlwind of activity recently as she sped up stairs, down stairs, from the front to the back of the Royal Oak Music Theatre putting the finishing touches on her annual "Just Let Me Breathe" concert fundraiser.
"It doesn't seem like this should be happening today," she said.
Through Hellen and her organization, the Rock CF Foundation, Schaller has generated thousands of dollars for the Cystic Fibrosis Foundation.
Cystic fibrosis is a genetic chronic disease that affects the lungs and digestive system. It stems from a defective gene that causes the body to produce thick, sticky mucus that clogs the lungs, obstructs the pancreas and stops natural enzymes from helping the body absorb food. About 70,000 people have it worldwide, the Cystic Fibrosis Foundation says.
Every morning, an air-filled vest shakes Schaller's lungs to loosen mucus. She lives in the hospital anywhere from two to eight weeks each year — fighting off bacteria that could kill her. But she doesn't focus on the fact that life expectancy for people with CF is 37 years.
"Just in the past few years I thought I wanted to do something I love, which is fundraising," Schaller said.
She feels for her peers who can't go out for fear of getting sick.
"That makes me not feel really good because I'm playing in a bar two nights a week. But you gotta weigh it," Schaller said. "Is it sitting at home and watching a movie, which you don't really want to do, or is it going after my passion which is drumming in a smoky bar?"
Schaller has no plans of slowing down anytime soon.
"She takes her medical needs in stride," said Dr. Joan Germana, the pediatric director of a cystic fibrosis care center at a New York hospital. "She dedicates herself to life."
Schaller worked with the Cystic Fibrosis Foundation on a Web site video advocating healthy lifestyles for CF patients. She participated in a medical trial for VX-770, a drug designed to help restore the balance of salt and water by acting directly on a malfunctioning protein.
Schaller's goals don't allow her to play victim to the lethal genetic disease.
"I've got two older brothers that don't have CF, and my parents have always treated me like I don't have CF," she said. "It made me realize that yeah I do have CF, I do have a genetic disorder, but it's not gonna stop me from doing anything."