ST. PETERSBURG, Fla. — Did you know cystic fibrosis is the most common, life-limiting genetic disorder in caucasians?
Last week, the feature film “Five Feet Apart” came out helping raise awareness about the disease. But local 18-year-old Lynsey Ferguson, who has cystic fibrosis, says the movie is a little misleading when it comes to what it’s really like to live with the disease.
“Cystic fibrosis is a genetic disease that affects the lungs, pancreas and liver. It’s an access buildup of mucus because our cells have a hard time filtering it out so we ultimately have a build up of mucus in our body,” Ferguson said.
Ferguson says in the movie the characters with cystic fibrosis leave their hospital rooms and stand closely together, two things that are not recommended.
“Two people with cystic fibrosis shouldn’t even be within the same room at all if they can help it because of their compromised immune systems," she said. "The movie makes the 6 feet apart thing seem bad, but in my opinion that’s what’s saving all of us. Staying far from someone who also has it is what prevents you from getting sick."
Ferguson also says the disease is more isolating than it’s portrayed in the movie. She says you can’t leave your hospital room without supervision and knowing that the hallway hasn’t had someone else with cystic fibrosis walk through recently.
“In the movie they leave and visit each other and unfortunately that’s not real life,” she said.
“Only 30,000 people have this disorder in Florida, that’s only 1,500 people in Florida so coming across someone with this disorder is rare,” said Deanna Green, director of the Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital.
Currently, the life expectancy for someone with cystic fibrosis is around 40 years old. But Ferguson says the disease is something that propels her to be the best she can be, graduating from high school and now attending college.
“It makes me appreciate life. I wake up and have food and can breathe,” she said.
While there is no official cure for cystic fibrosis, there are a few medications being tested that may increase the life expectancy another 20 years.
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