The rare disease Gaten Matarazzo lives with

Dustin Henderson has always stood out among the various characters on the mega-popular series Stranger Things. Sure, Eleven and Hopper get all the action sequences, but Dustin is arguably the heart of the show, and has been since the very first season. Sassy and cocky, he’s a total nerd, masterfully played by Gaten Matarazzo. Matarazzo does such a great job in the role that many viewers may not realize that both Matarazzo and his character Dustin suffer from a rare disease.

Of course, “Stranger Things” hasn’t shied away from making references to the show. Dustin, like Matarazzo in real life, is struggling with his teeth coming out. While his co-star started the show with fresh chompers, Dustin was toothless for season one. In last Season 4, Dustin also joked about his lack of collarbones – something Matarzarro also lives with. According to the actor in an interview with Live With Kelly and Ryan, the producers wrote his condition into the show. “They looked at me and asked me a few questions about my life,” he recalled. “They had no idea what it was.”

So what exactly does Matarazzo live with? The Stranger Things star suffers from an extremely rare condition called Cleidocranial Dysplasia. According to Johns Hopkins Medicine, it affects about “one in a million people.” The disorder causes bones that “might be differently shaped or more fragile than normal… Skull and collarbone abnormalities, along with dental abnormalities, are the hallmarks of CCD.”

Gaten Matarazzo has had multiple surgeries throughout his life

Gaten Matarazzo has had multiple surgeries throughout his life, most notably on his teeth. Taking to Instagram, the actor opened up about an operation he had in 2020 to remove extra teeth after having first surgery on his mouth when he was just 14. In the post, he wrote, “I had multiple surgeries to extract these teeth from my gums and help uncover the teeth, which given my age should have already grown.” The surgery exposed six adult teeth and took a few days to recover .

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In total, Matarazzo had at least 14 teeth pulled. According to his interview with Live With Kelly and Ryan, Matarazzo said many of his teeth aren’t growing properly or are in the wrong places, requiring surgeries and extractions to remove extra teeth. But Matarazzo isn’t afraid to go to the dentist’s office; In fact, according to an interview with Esquire, it’s one of the places where he feels he grew up as an equal.

“There were days when I went to the orthodontist, it hurt a lot. But I would look forward to it because it was one of the few environments that I could walk into and feel equal to instead of feeling addressed to the point of,” Matarazzo said. He’s grateful his parents didn’t try to take his Disturbance to hide from him, because as Stranger Things keeps reminding us, kids are smarter than you think.

The Stranger Things actor was fighting for his big break

It might be hard to imagine now, but Gatan Matarazzo was admittedly struggling to make his big break in Hollywood. Believe it or not, due to his condition, the casting agents were immediately skeptical and didn’t want to take any chances with the then-unknown child actor. Matarazzo struggled to land small spots in commercials and ads before being cast in Stranger Things. In an interview with Michael Rosenbaum, Matarazzo recalled how previous agents had shown their ignorance of his illness and focused on his lack of teeth.

“They didn’t realize how seriously my illness would affect me until I was an adult,” he said. “‘Oh child, we adore you, but sure, keep your teeth in,’ the casting directors kept urging me. I kept hearing, ‘Put your teeth in,’ and then they were like, ‘Well, you’re not going to have much luck in that area,'” Matarazzo continued. In a separate interview with The Doctors, Matarazzo spoke more about that Stigma.” That’s one of the main reasons why I [hadn’t] got roles because of my lisp and the dental situation and my size,” he admitted.

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But according to Live With Kelly and Ryan, Matarazzo also enjoys being an advocate for others who have the condition and is grateful for the exposure his platform brings. “It’s really exciting to know that your work is affecting people other than yourself, that you’re making a difference in the world,” he said.