'Stranger Things' associated with public awareness of rare disorder
Friday, February 21, 2020
For Oklahoma State University College of Osteopathic Medicine student Austin Johnson, watching an episode of “Stranger Things” on Netflix while studying led to an eye-opening research opportunity.
As medical students, Johnson said he and his classmates spend the majority of their days studying disorders and how to identify them.
“The idea came to me one night as I was working on my computer with the ever-popular ‘Stranger Things’ Netflix TV show on in the background. I remember the show said something about the character Dustin’s disorder cleidocranial dysplasia so I Googled it, read a few lines about it and then didn’t think much of it until later that week when I wondered how many other people had conducted the same search,” he said.
Cleidocranial dysplasia (CCD) is a rare skeletal disorder characterized by small or absent clavicles, multiple dental abnormalities and open fontanelles, or soft spots. It occurs one in every million births and can be inherited or occur randomly.
Johnson and his coauthors— fellow OSU medical students Craig Cooper and Trevor Torgerson— used data from Google Trends and CCD-related foundations to gauge public interest and awareness of the disorder after the release of each of the show’s three seasons.
The week after season three was released in July 2019, relative search interest in CCD saw an increase of 94.4 percent above the expected search interest, a drastic change from the 11.2 percent increase after season one and 13 percent after season two.
In addition, all CCD-related foundations reported an increase in public interest in the disorder after the release of “Stranger Things.” Before the show aired, the website AboutKidsHealth.ca reported an average of five to 80 CCD-related website page views a week. The week after season three was released, website traffic to CCD-related pages reached 10,000 views.
“The results of individuals searching about a famous actor were not surprising, but the increased website traffic to CCD-related foundations was a surprise,” Johnson said. “The TV show was drastically raising awareness for a rare disorder. Raising awareness has been shown to increase research funding, improve early diagnosis, expand treatment options, broaden coping strategies, reduce feelings of isolation or discrimination and improve the overall quality of life for those with rare disorders.”
Gaten Matarazzo, who plays Dustin on “Stranger Things,” has CCD and the show has featured scenes of his character educating others about the disorder.
"What is so wonderful to me about ‘Stranger Things’ and their incorporation of CCD is that it was natural. They could have chosen to hide the disorder, but instead they brought it to light. The show is not about medicine and does not even focus on rare diseases, yet it was able to have a huge impact on the CCD community."
“Although it is important for writers to exercise caution when portraying character with rare disorders, the inclusion of such characters in the mainstream media may be a beneficial strategy to raise awareness of them.”
Sara Plummer | Communications Coordinator | 918-561-1282 | sara.plummer@okstate.edu