Gaten Matarazzo’s role in ‘Stranger Things’ sparked awareness on rare cleidocranial dysplasia disorder: Study
Television portrayals of rare disorders — which collectively affect an estimated 400 million globally — could create public awareness of these diseases, and reduce feelings of discrimination or isolation.
This, according to an analysis by researchers from Oklahoma State University, which shows that Dustin Henderson's portrayal of a rare disorder on popular Netflix series ‘Stranger Things’ created massive public interest in the condition.
The actor who plays Henderson in the series was born with cleidocranial dysplasia (CCD), a rare disorder of which the most prominent features are missing or abnormal growth of the teeth and collarbones.
According to the National Institutes of Health (NIH), signs and symptoms of cleidocranial dysplasia can vary widely in severity, even within the same family. Characteristic features include underdeveloped or absent collarbones (clavicles), dental abnormalities, and delayed closing of the spaces between the skull bones (fontanels).
The fictional character shares the condition with actor Gaten Matarazzo III, who portrays Henderson. “The most prominent features of CCD — absent or abnormal bone growth of the clavicles and teeth — have been featured in scenes in which Dustin educates his peers about his disorder,” says the research team.
The analysis reveals that search interest for the condition had an increase of 94.4% above the expected search interest, the week after the release of Season 3 of Stranger Things.
In the current study, the team used Google Trends and CCD-related foundation website data to investigate the association of television portrayals of CCD with public interest and awareness of the disorder.
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The experts searched globally using the “health” query category with the keywords cleidocranial dysplasia. Data were collected for five years from July 20, 2014, to July 16, 2019.
The researchers used the data to gauge public interest and awareness of the disorder after the release of each of the show’s three seasons. They found that each season of the show was associated with an increase in weekly search interest for CCD above what would be expected. For example, a mean increase of 11.2% was seen after Season 1, and an increase of 12.9% was seen after Season 2.
“Rare disorders pose a significant medical and economic burden for both patients and the healthcare system... Groups of patients with rare disorders have difficulty advocating for themselves owing to a lack of funds, outreach, or manpower. Solutions are thus needed to promote awareness. Television portrayals of rare disorders may affect public awareness of these disorders, especially on shows with broad viewership,” says the team.
The analysis also shows that while data from most CCD-related foundations contacted were not quantifiable, they reported an increase in the public interest. Web traffic to one site for a CCD-related information page reached 10,000 visits the week after the show’s third season premiered last summer.
“In addition, all contacted CCD-related foundations reported an increase in public interest about CCD after the release of Stranger Things; however, only data from AboutKidsHealth were quantifiable. Before the release of Stranger Things, AboutKidsHealth reported a mean of 5 to 80 CCD-related website page views per week. The week after the release of season 3, website traffic to CCD-related pages reached 10 000 visits,” says the study published in JAMA.
According to the experts, through their expansive reach to the public and media connections, celebrities such as Matarazzo may serve as positive agents to raise awareness and educate the general public. Since the introduction of CCD on 'Stranger Things', Matarazzo helped establish the foundation CCD Smiles to promote global awareness, provide dental care assistance, and support research, they say.
"Similarly, raising awareness has been shown to increase research funding, ameliorate 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,” say researchers.
“Although it is important for writers to exercise caution when portraying characters with rare disorders, the inclusion of such characters in the mainstream media may be a beneficial strategy to raise awareness of them," they say.