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Taking A Step Back From… Five Feet Apart

Posted on Mar 28, 2019

Deanna Green, M.D., left and Lynsey, right
Deanna Green, M.D., left and Lynsey, right

Five Feet Apart is a feature film that recently debuted in theaters. This romantic drama is about two star-crossed teens who each have cystic fibrosis, and who fall for each other despite an illness that necessitates they maintain physical distance due to the risk of infection.

Cystic fibrosis is an inherited genetic disorder that impacts the respiratory and digestive systems.

We asked Deanna Green, M.D., director of Cystic Fibrosis Center at Johns Hopkins All Children’s Hospital, and 18-year-old Lynsey, a patient who has cystic fibrosis, if this compelling teen flick got the facts right.

What did you think of the movie?

Lynsey: I thought the movie was really good. I thought the storyline was very, very touching. I can’t imagine if I fell in love with somebody else who has cystic fibrosis. … The struggle would be immense. I cried through a lot of it. I just put myself in Stella’s (main character’s) shoes. Touch is so important, and she couldn’t even hug him. That’s such a huge thing.

Dr. Green: I was pleasantly surprised by the movie. This film did touch on some issues that do arise for some in our patient population. I believe the film could help raise awareness for a disease that not a whole lot of people are familiar with. There are some things in the movie that are not accurate, and some patients might find some parts upsetting, but overall, I thought it was OK.

What did the movie get wrong?

Dr. Green: There were several things, but one big thing—I know the premise of the movie was that the teens were breaking the rules by coming 1 foot closer together, hence the movie title Five Feet Apart. The problem with the rule they broke is that it was already inaccurate. The 6-foot rule refers to patients when they are outdoors. Once you’re inside, whether it’s a small room, hallway or large auditorium, it has one AC system. That closed system can spread bacteria that a healthy immune system would easily fight off, but it’s harder for CF patients. Those patients treated in our hospital must stay in their rooms or if they do leave, they must have a caregiver escort them who can make certain that no other CF patient has been in the area within the last 30 minutes.

Lynsey: For example, I have two bugs—two bacteria that live within my lungs and grow within my mucus. It could be different bugs with every CF patient. So if I am near another person with CF who has other infections, I will have to live my life with my infections plus his. They will just colonize in my mucus and never leave. When you’re young, it’s tempting to be a rebel, but I would never do it because I could get really sick.

What else do you feel wasn’t accurately reflected in the film?

Dr. Green: One of the major inaccuracies was in portraying 17-year-olds as gravely ill. The vast majority of our patients with this disease are not dying. They have excellent lung function. They are not even close to needing transplant. Since I first began treating patients more than a decade ago, the life expectancy has changed from age 30 to age 42. Newer medications are beginning to change that as well for many patients, with life expectancies closer to 60 years old. There is tremendous hope for our cystic fibrosis patients.

What is a typical day like for the average CF patient?

Dr. Green: This is one thing the movie did pretty well. The regimen is intense. The average patient takes around 45 pills a day. They wake up early to start their airway clearance treatments, which includes vest therapy and nebulizer meds. This can take up to an hour to perform and they do this two to three times a day. These patients require about three times the calorie intake as kids who don’t have CF because they don’t absorb fat and protein normally. Some patients need a gastrostomy tube to ensure they get enough calories in.

Lynsey: I have my routine, but I can generally do most anything other people do. I go to college, hang out with friends. I date. Sleep is important. Sometimes if I’m not feeling well, I’ll need to say no to some things, but I try to experience life fully.

What do you hope this movie will do for people who have cystic fibrosis?

Dr. Green: I hope this movie will help people have a better understanding of the disease, and what our patients are facing. While they do have challenges, they have so much to offer. The healthiest patients are the ones who are open and honest about their CF. This disease does not have to define them.

Lynsey: I hope the movie will inspire people to educate themselves. I definitely have my bad days, but I’m actually grateful for the experience of CF. It has matured me early. It has given me an appreciation for life that other people may not have. I never take a moment for granted because I know how quickly it could be taken away. So each day I try to remember that I’m really lucky to be here. I’m grateful that I have cystic fibrosis to open my eyes for me.

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