How It Feels to See CF on Screen

Seeing cystic fibrosis portrayed in film and on TV is a mixed bag, and often my disease is overly dramatized to get more views. But I still think there’s value in making people more aware of CF.

| 5 min read
Ashley Wilson
Ashley Wilson
Ashley wearing a Directors t-shirt and instructing an actor on the set of a film

“I don’t understand why they need to make a movie that highlights my disease.” I was once very wary of films and television series that had characters with cystic fibrosis. Medical dramas can often be dark and embellished to captivate the audience. As much as I personally enjoy watching such dramas, it also put a bitter taste in my mouth because what was seen on the screen gave misconstrued ideas to the public. The more drama and hopelessness seen with fictional cystic fibrosis cases in film, the more viewership grows.

I noticed over time that cystic fibrosis was slowly starting to be seen more in film, as it was something audience members could either grow awareness of or pity.

My mentor who had cystic fibrosis once said, “Filmmakers can make movies about whatever they want to. Whether they decide to portray cystic fibrosis correctly or incorrectly, people will look to the cystic fibrosis community with curious eyes. It is our job to inform and educate the public.”
 

My perspective of cystic fibrosis in media began to change as I, too, became a filmmaker. I began to critically look at films with two lenses: how well was the film made and how does this film represent the cystic fibrosis community?

I began reviewing television series where I had grown up seeing fictional cases of cystic fibrosis.  The episodes would be dramatic and a bit rushed, but that is how most medical shows are. Most storylines involved a patient with an incurable bacterial infection in the lungs or who needed a lung transplant. It was one or the other. The first television series that caught my eye was Red Band Society. Cystic fibrosis warrior, Claire Wineland, gave weekly reviews on her YouTube channel. I agree with her aspect of the television series. It was an entertaining series that showcased a variety of things that could occur in the hospital, loosely speaking. Obviously, it’s media, and not everything will be accurate — it is for entertainment.

I think we are all aware of the film, Five Feet Apart. That was the first film I had seen that captivated a wide audience. When I speak to someone about cystic fibrosis or they discover I have cystic fibrosis, most people will ask, “Like the film, right? About five feet?” They then proceed to ask how accurate the film was or how it compares to my lifestyle. I am aware that everyone has their opinions of that film. I personally love the film and could go on and on, but I would say one of the positives that has come from the film is that it has brought awareness to the disease.

Recently, a new film has been released on Netflix, called Hi Nanna. Hi Nanna tells the story of Mahi, a six-year-old with cystic fibrosis who lives with her father and grandfather. She convinces a new friend to help her discover the unknown story of her mother. I was unaware of the release of this film and came to find out that it is an Indian romantic drama. I did some research prior to watching the film because I was unaware of the number of cystic fibrosis cases in India. I quickly learned that there are many people with CF in India.  

Hi Nanna captured the emotional and mental effects of parents of people with cystic fibrosis. Mahi lived a normal life, but you could see at times the physical strain that her body went through regarding exercising, breathing treatments, and medications. Her father, Viraj, would go above and beyond to care for his daughter. This film captivated my interest cinematically as the visuals were beautiful. The pace of the film also kept my interest, and I love seeing other cultures and traditions portrayed on screen. I do appreciate how cystic fibrosis was depicted in the film. It wasn’t the full focus of the entire film, but it was balanced with the storyline. I found that the treatments seen on screen were portrayed accurately. I know that some viewers would like to see actors with cystic fibrosis. I think it would be great to see proper representation, and I think one day we will see more of that in film. For now, I am grateful that there is another film that brings more awareness to cystic fibrosis.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Ashley Wilson

Ashley Wilson is the creator behind the YouTube channel, Ashley’s Roses, and the host and producer of the Blooming Roses podcast. She is also the author of the poetry book, Beauty Grown From Thorns. Through her independent production company, Ashley has produced two films, I Choose You and Mezzaluna. She is currently working on her third film, Beauty Grown From Thorns. Ashley uses her platforms to share her story and bring awareness to cystic fibrosis.  She strives to create multimedia content that leads to positive change in a modern world.

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