These Films Accurately Portray People Living With Rare Diseases

They're sipping wine, smoking, and mumbling to each other—viewers assume this is the dregs of a wild night out, but it's two parents talking about their newborn.

Oct 10 2017, 12:00pm

It might be a stretch to say that the medical dramedy is over, but the heyday of Grey's Anatomy, House, and Scrubs is definitely behind us. These shows challenged audiences with various degrees of scientific know-how (Scrubs imparted valuable lessons about poop, never forget), but more often than not, their plots revolved around ailments and concerns that we'd heard of before: cancer, broken limbs, cardiac arrest. At Disorder, the rare disease film festival that took place in Boston last week, audiences were challenged to make sense of some truly complicated science behind genetic mutations and abnormalities. The series of films, though, were a poignant showcase of children and young adults who are navigating their illnesses almost entirely in the dark––all because of the limitations of our knowledge and research, which stop physicians from being able to detect or treat their rare illnesses.

Of the six short films I watched, two stood out as most obviously challenging how mainstream television and film portray illness: Tomasz Silwinski's Our Curse along with Imagine, directed by 19-year-old Carl Mason. It wasn't because the diseases these films tackled were the most upsetting, or because the science was the most fascinating––all six of the films were completely engrossing, and raised awareness for their respective causes without reducing the patients to caricatures. These films manage to preserve the humanity of both patient and caregivers while depicting conditions that most viewers could never imagine possible. Silwinski and Mason, in particular, manage to transcend the boredom barrier of medical documentary with thoughtful storytelling—they use characters multi-dimensional enough that it's possible to forget we're viewing them through the lens of a festival intending to raise awareness for rare diseases. In both films though, the focus is not on the patient, or even the details of the illness itself (though both address and explain what the disease is), but on the caregivers.

Our Curse begins with two exhausted looking young adults slumped on a couch in a dimly lit living room (the director and his wife). They're sipping wine, smoking, and mumbling to each other––viewers can assume this is the dregs of a wild night out, or a party that is just winding down. Instead, it's two parents talking about their newborn, and the many challenges that he'll face every single night as a patient coping with the Ondine's Curse, more formally known as congenital central hypoventilation syndrome (CCHS). Those impacted by Ondine's stop breathing in their sleep, and require a lifetime of of mechanical ventilation on a ventilator.

The film is in Polish, but the translation doesn't detract from the raw emotions throughout the twenty-seven minute run: fear, anger, sadness, and confusion—but also optimism, excitement, and gratitude. "I see people with their children on the street, and sometimes I forget I have a son. I don't even know my son," the mother says to her husband on one of their nightly conversations on the couch. The couple is shuttled from hospital to hospital, and every night, they sleep sporadically in fear that something could go wrong with the ventilator that keeps their baby alive. Mechanical gasping and whirring sounds punctuate the film (the child breathes through the machine they hook him up to each night), so much so that by the end, I actually stopped noticing that normal breathing doesn't sound this way.

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In Imagine, I watched toddler Millie progress through her early childhood years while battling Niemann Pick Type C, which is an extremely rare disease that causes neurological decline and dementia. Although much of the film focuses on the internal turmoil and anxieties of Millie's parents, she is our narrator. At no point does she acknowledge that she has a disease; instead, she observes her own struggles with agility, focus, and other things that had once come naturally to her, and continue to be easy for her friends at school. It's almost as if Mason wants to give Millie a normal childhood; we watch her spin on stage as an ailing ballerina, play at recess with her friends, and raise her hand in class—all as if nothing is wrong.

But Millie's parents are our confirmation that something is, in fact, very wrong. Their fear of not being able to get ahead of the disease (toward the end of the film, they argue about traveling from their home in the UK to America, where treatment might be possible) is impossible to ignore––and this is how Mason wants it to be. The patients (in the case of all the films I attended at Disorder, all children) are often blissfully unaware or unable to articulate what's happening to them. The people caring for them make their way through appointment after appointment, and cope with emotion after emotion.

What stood out the most about Our Curse and Imagine were the full ranges of human emotion that shone through both films, including optimism. In Our Curse, two parents go on vacation with their newborn, pushing him in a stroller and showing him animals, plants, and sights of nature he isn't able to see when he's hooked up to a breathing machine at home. He's still unable to cry out or talk, and his labored gargling noises never allow the viewer to forget that this isn't just any ordinary family vacation.

Silwinski and his wife are trying to give their son (and themselves) normal experiences. They are working to not to let their baby's illness cast an impenetrably dark shadow on their lives. Meanwhile in Imagine, Millie is still hopeful (we hear, through her narrated thoughts) that she will be well again, and her primary concern isn't that she, herself, feels better, but that her mother stops crying, and that her parents stop fighting. Millie isn't just a patient, she's a child, and her innocence and selflessness add a dimension of humanity to her character that many documentaries and films about disease don't often afford patients.

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