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How ‘Stranger Things’ Actor Puts a Positive Spotlight on a Rare Disease

  • Public awareness of cleidocranial dysplasia is rising thanks to ‘Stranger Things’ actor Gaten Matarazzo.
  • Matarazzo was born with the rare disorder and has spoken openly about the effects on his daily life.
  • Cleidocranial dysplasia can affect a person’s teeth and bone development as well as their height and facial features.

Minutes into the first episode of the popular Netflix sci-fi series “Stranger Things,” a preteen character named Dustin fends off classmates who are taunting him.

“I told you a million times my teeth are coming in. It’s called cleidocranial dysplasia,” Dustin says.

If you’re not a fan of the cult sensation, chances are you might not have heard that term before.

According to the National Organization for Rare Disorders, cleidocranial dysplasia, also known as CCD, affects about one in 1 million people worldwide.

The rare genetic condition primarily interferes with teeth and bone development.

Someone with CCD may also be short and have distinctive facial features such as a prominent forehead, abnormal or “baby” teeth, and no collarbones.

Disease now on the public radar

Gaten Matarazzo, the 17-year-old actor who plays Dustin Henderson on the show, was born with CCD.

The producers wrote the “Stranger Things” storyline so that Matarazzo’s character would have CCD, too.

Netflix says season three of the series was seen by 64 million households in the first 4 weeks after its release last summer.

Scientists at Oklahoma State University studied search engine trends and CCD-related foundation websites to gauge public interest in the rare disorder after the first three seasons of the Netflix series.

They published their results last week in a research letter in the journal JAMA Otolaryngology Head and Neck Surgery.

The researchers found that global search interest in CCD spiked nearly 95 percent the week following the release of season three last July. And traffic to one of the CCD-related websites reached 10,000 visits in that same time period.

Part of that interest is likely because Matarazzo has been so open about what it’s like to live with the condition.

The teen actor goes on talk shows. He also shares information with his 13 million Instagram followers about his everyday life, even though normal for him includes multiple dental surgeries.

In a recent interview on the Tonight Show, Matarazzo talked about his final year in high school.

“I love it. I took a bunch of elective classes this year. There’s no like requirements anymore since I’m a senior. The only requirements were gym and English” he said.

“I took video production. So I made little movies in class. It was fun.”

Advocacy groups see a bump

“Gaten has made it cool to have CCD,” said Kelly Wosnik, DNP, a nurse practitioner in Utah and the founder of CCD Smiles.

“‘Stranger Things’ gave him a huge platform. That has helped so much with awareness,” she told Healthline.

“He’s a very popular Hollywood star, and he’s put it out there. Because he’s so lovable, people are more likely to want to come out of the woodwork and say they have CCD and become part of the CCD family.”

Connecting those people and building a CCD family is what Wosnik set out to do. The Utah nurse practitioner who runs her own clinic was also born with CCD.

“I grew up in Central California, and it was hard to find anyone else like me. It wasn’t until I was 33 years old that I met someone else with CCD through Facebook. That was a life changing experience. It filled a big hole in my heart,” she said.

“It was important for me to find every single person with this condition who might feel isolated and alone” she added.

Wosnik says the network is growing. The private Facebook groups that are only for people with CCD now have a roster of more than 1,200 members from around the world.

“The awareness a fictional show like ‘Stranger Things’ brings to our community has been very beneficial” said Erica Mossholder, executive director of the Children’s Craniofacial Association.

Her organization supports families whose children may have facial differences due to conditions such as CCD.

“Anytime these conditions get this kind of attention, they start a conversation,” she told Healthline.

“We love it when it’s shot into the national spotlight so we have an opportunity to help people learn about it.”

Mossholder says some of the most significant challenges faced by children who look different are bullying and isolation in their schools and communities.

“We love it that the actor is representing a condition he actually has,” she added.

“It helps kids understand everybody’s got something. It’s just part of your own story.”

What’s next?

Three years ago, Wosnik teamed up with Matarazzo to officially register and launch the nonprofit foundation CCD Smiles.

Together they’ve lobbied Congress about the importance of funding dental research for people with CCD. The group’s 2020 conference is scheduled for August in Salt Lake City.

The mostly volunteer group is hoping to expand so it can increase awareness, be a resource, and help fund research.

“Stranger Things” has been renewed for a fourth season.

“This has exceeded my expectations” Wosnik said. “When I grew up, it seemed like no one understood or cared. Now it’s like the whole world cares. It’s exciting.”

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