PHOENIX — Steven Aman of Mesa, Ariz. is hoping a new Hollywood movie will spread awareness to the genetic disease he lives with.
The movie called, "Five Feet Apart," opened in theaters this past weekend. It’s about a young couple, played by former Disney star Cole Sprouse and Arizona native Haley Lu Richardson, who fall in love while dealing with the debilitating lung disease cystic fibrosis.
Pulmonologist Dr. Bhuvin Buddhdev of the Norton Thoracic Institute at St. Joseph’s Hospital and Medical Center says about 1,000 people get diagnosed with cystic fibrosis every year. The life expectancy of those diagnosed is about 45 years.
Cystic Fibrosis is a genetic disease that causes persistent lung infections and limits the ability to breathe over time, according to the Cystic Fibrosis Foundation.
Aman says his lungs operate at about 35 percent capacity.
“You get repeated infections. You get scarring, eventually, from those infections and eventually renders the lungs useless,” Aman said.
Cystic fibrosis makes it very difficult for the lungs to clear out thick mucus.
“It’s a struggle every day. Keeping up with the medicines. Making sure you clear that clog of mucus from your lungs every day to make sure you don’t get infections,” Buddhdev said.
That's a major plot point in the movie. As the title suggests, Will Newman (Sprouse) and Stella Grant (Richardson) enter a romance but keep a distance of five feet from each other to reduce the risk of cross-infection.
The lungs of a patient with cystic fibrosis often deteriorate to the point where patients require a transplant. Aman has had two transplants. The first transplant, which gave him 80 percent lung capacity, lasted six years before his body rejected the lungs.
He then got a second, more complicated lung transplant at the Norton Thoracic Institute, which is one of the leading centers in the country for lung transplants. The center performs about 100 transplants a year.
At 50 years old, Aman is doing well and counts his blessings. He still takes medications to keep his lungs healthy.
“I've been a pretty good fighter,” Aman said. “I still have some things to do. Still trying to figure out what that is but there are still some things on my plate. Just waiting for the right cues.”
Aman thinks "Five Feet Apart" will help bring awareness and clear up and misconceptions about cystic fibrosis. Buddhdev hopes the movie shows the importance of organ donation.