Hollywood hasn’t always made an effort to depict rare disease on screen, and when it has, the results have been mixed. Certain depictions (particularly in movies and TV shows from several years or decades ago) that might have seemed skilled and compassionate might now strike viewers — especially viewers part of the rare disease community — as insensitive, incorrect and/or incomplete. This list is not meant as an endorsement of all of the following portrayals of rare disease in media, but rather a survey of the rare disease landscape in Hollywood. Is there a movie you’d like to see added to the list? Email content@allstripes.com to let us know.
1. Lorenzo’s Oil (1992)
Based on the true story of Augusto and Michaela Odone, the parents of a son with adrenoleukodystrophy (ALD), whose efforts to research their son’s rare disease resulted in the development of Lorenzo’s oil, an investigational treatment sometimes used (with mixed results) in asymptomatic ALD. The movie has been criticized by medical experts for portraying Lorenzo’s oil as a miracle cure.
2. Zoey’s Extraordinary Playlist (2020-2021)
In this musical TV series, a young woman discovers she has the ability to hear the thoughts of people around her in the form of songs. One such person is her father, played by Peter Gallagher, who’s been diagnosed with progressive supranuclear palsy (PSP).
3. Chicago Med (2015-present)
A 2016 episode of Chicago Med featured a 13-year-old girl character with mitochondrial disease, which a doctor later refers to as a “wastebasket diagnosis.” The episode received considerable criticism from people with mitochondrial disease who say they already struggle to feel heard by medical professionals.
4. The Good Doctor (2017-present)
The season 5 premiere of this ongoing medical drama featured a woman with scleroderma, initially diagnosed as Raynaud’s phenomenon. Some viewers responded positively to this depiction of scleroderma, particularly the character’s five-year struggle to get a diagnosis.
5. Strain (2020)
In this award-winning Nigerian drama, a father must raise funds to care for his son, who is diagnosed with sickle cell disease. Producers worked closely with Sickle Cell Foundation Nigeria to ensure accuracy, and the movie’s setting is particularly meaningful given that nearly 90% of the world’s sickle cell disease population lives in Nigeria, India or the Democratic Republic of Congo.
6. The Mighty (1998)
In this comedy-drama, Kieran Culkin plays a 12-year-old boy with Morquio syndrome, and as a result, walks with leg braces and crutches. The movie depicts the friendship between Culkin’s character (nicknamed “Freak”) and his friend Max, a teenage boy with dyslexia.
7. Five Feet Apart (2019)
Two teenagers with cystic fibrosis must stay six feet apart from one another due to their shared vulnerability to infection — a challenge that grows more challenging still when they fall in love. While the Cystic Fibrosis Foundation applauded the movie’s efforts to raise awareness, others within the CF community found the movie’s depiction of CF trivializing.
