Cystic Fibrosis: A Film and More.

By - Yvette Willemsen

Since the 2019 release of Justin Baldoni’s heart-wrenching film, Five Feet Apart, many of us have come to terms with the debilitating condition known as cystic fibrosis. Baldoni’s film was perceived as an accurate representation of the day-to-day and lifelong struggles that dictated the lives of cystic fibrosis patients. We may have all teared up (just a little) at Will and Stella’s story, but the even sadder reality ultimately is that the disorder continues to harm at least 70,000 countless lives around the globe.

Cystic fibrosis (CF) primary affects the lungs and digestive system due to a malfunction in the exocrine system that is responsible for producing saliva, sweat, tears, and mucus (Cystic Fibrosis Australia, 2020). Currently, there is no cure.

People with CF develop an abnormal amount of excessively thick mucus within the lungs, airways, and digestive system. The digestive functions of the pancreas become impaired, resulting in recurrent infections, and horrifically, irreversible damage, with lung failure the major cause of death (Cystic Fibrosis Australia, 2020).

According to Cystic Fibrosis Australia, the disorder is autosomal recessive, meaning that it occurs equally in males and females. Management and treatment of CF is lifelong, ongoing, and relentless- more than just violent coughing fits. A person with cystic fibrosis may consume up to sixty capsules daily to aid food digestion, with the requirement of up to four hours of intense airway clearance physiotherapy. Other treatment involves antibiotic therapy to treat lung infections, aerosol mist inhalations via a nebuliser to stabilise airways, and salt and vitamin supplements (Cystic Fibrosis Australia, 2020).

The factor donning cystic fibrosis as a debilitating disease is that people living with it can exist in complete loneliness, something we wouldn’t wish on anybody. Like Will and Stella from Five Feet Apart, people with CF cannot personally interact, disabling them to share their experiences and offer support.

Luckily, there are organisations who can, and who do.

The Cystic Fibrosis Foundation (CFF) is a voluntary, non-profit organisation, with a mission to assure the development of the means to cure and control CF (National Organisation for Rare Disorders, 2021). More importantly, it aims to improve the quality of life for those with the disease.

Although Baldoni’s Five Feet Apart isn’t based on a true story, the film yielded inspiration from experiences of those with the real disease. The film was wholly dedicated to Claire Wineland, an extraordinary young woman and CF patient who was known for her infectious spirit whilst battling the disease. Claire commented in Jeff Ayers blog, Death Wish Coffee in 2018, “As I grew up with CF, I started to realise that the way in which sick people are actually represented and talked about in society...is degrading. People don't see them as full, complex beings with wide ranges of emotions, life experience and valid things to share with the world” (Nicolaou, 2019). Let’s end our apathetic tendencies towards Cystic Fibrosis and create change. For Claire.