The Smile Seen 'Round the World
It’s one of the most endearing images from the first season of stranger things: a kid with a curly mop of hair and a wide, toothless grin, fiercely loyal to his friends in the face of interdimensional monsters. That character, Dustin Henderson, felt real in a way few on television do. The reason? His story was rooted in the lived experience of the actor who plays him, gaten matarazzo.
That unique smile, a key part of the character's charm, wasn't just a Hollywood invention. It was an intentional choice by the show's creators to incorporate the actor’s real-life condition into the script. This decision turned a potential point of insecurity into a global symbol of representation for people with rare diseases. The story of Gaten Matarazzo’s Cleidocranial Dysplasia is not one of overcoming a flaw, but of embracing a distinction and turning it into a source of strength and connection.
Understanding Cleidocranial Dysplasia (CCD)
To understand the significance of Gaten's journey, we first need to understand the condition itself. Our sense-maker, Cory, helps break down the pattern here. “This isn't just about 'bad teeth'; it's about a systemic genetic blueprint,” he explains. Cleidocranial Dysplasia (CCD) is a rare genetic disorder that primarily affects the development of bones and teeth.
According to the National Institute of Dental and Craniofacial Research, individuals with CCD often have underdeveloped or absent collarbones (clavicles). This is the 'cleido-' part of the name. It allows for an unusually large range of motion in the shoulders, a feature Gaten has demonstrated on talk shows. The condition also impacts the skull ('-cranial') and, most visibly for Gaten, the teeth ('-dysplasia'), often causing baby teeth to be retained and adult teeth to be delayed or impacted.
For Gaten, this meant multiple, complex dental surgeries to extract baby teeth and expose the adult ones trapped in his gums. Instead of hiding this, he and the Duffer Brothers wrote it into Dustin’s storyline, directly referencing the condition. This act of integration is a powerful example of reframing. It transformed a private medical struggle into a public narrative of acceptance. Gaten Matarazzo’s Cleidocranial Dysplasia became a teachable moment for millions.
Cory offers a permission slip for anyone feeling defined by a diagnosis: “You have permission to see your perceived flaws not as deficits, but as data points in the unique and complex story of you. They are not the whole book, but they are an authentic chapter.”
From Insecurity to Advocacy: Owning His Story
Before the world knew him as Dustin, the reality of living with a visible difference was a significant hurdle. Imagine being a young actor in an industry obsessed with perfection, constantly being told 'no' because you don't fit a conventional mold. It’s a weight that could easily crush a person’s spirit.
As our emotional anchor, Buddy, always reminds us, we need to validate the feeling behind the action. “That fear of rejection wasn’t a weakness; it was a natural response to a world that hadn't yet caught up to your uniqueness,” Buddy would say. In an interview with People magazine, Gaten spoke about how his condition cost him roles early in his career. The lisp and the delayed teeth development were seen as obstacles.
But the casting of Stranger Things was a turning point. By not just accepting but celebrating his condition, the show gave him a platform. It was here that Gaten made a conscious choice: to pivot from personal struggle to public advocacy. He began openly discussing Gaten Matarazzo’s Cleidocranial Dysplasia, raising awareness and funds for organizations like CCD Smiles, which supports those affected by the disorder.
This is where Buddy’s “Character Lens” comes in. What others saw as a physical imperfection was, in fact, the very source of his resilience and empathy. He became one of the most visible celebrities with rare diseases, and in doing so, he made countless kids and adults who were 'born different' feel seen, understood, and a little less alone. His bravery wasn't in spite of his condition; it was forged because of it.
How You Can Be an Advocate for Yourself and Others
Inspiration is a powerful emotion, but without a plan, it remains just a feeling. Our strategist, Pavo, is here to turn that feeling into action. “Advocacy isn't just for celebrities,” she states. “It’s a strategy for reclaiming your narrative and building supportive communities.” Gaten’s story offers a clear blueprint.
Here is the move—a practical plan for turning your own unique story into a tool for empowerment:
Step 1: Master Your Narrative.
Before you can educate others, you must be comfortable with your own story. This doesn't mean you have to share every detail, but you should have a clear, concise way to explain your situation. Pavo suggests having a script ready. For example: “I have a condition called X, which affects Y. I'm happy to talk about it if you're curious, as it's an important part of my journey.” This puts you in control.
Step 2: Choose Your Platform.
Gaten Matarazzo has a global stage, but a platform can be anything: your Instagram, a blog, a local support group, or even just your family dinner table. The goal is to start conversations in spaces where you feel safe and can be effective. Start small and build your confidence.
Step 3: Amplify the Experts.
You don't have to be a medical expert to be an effective advocate. A key part of the strategy is to support and amplify the work of organizations already in the field, just as Gaten has done for the CCD community. Share resources from foundations, donate if you can, and direct people who need help to the professionals. This makes your advocacy more credible and impactful, especially when discussing topics like the journey of managing Gaten Matarazzo’s Cleidocranial Dysplasia.
FAQ
1. What is the rare condition Gaten Matarazzo has?
Gaten Matarazzo has Cleidocranial Dysplasia (CCD), a rare genetic disorder that affects the development of bones and teeth. It is characterized by underdeveloped or absent collarbones and various dental abnormalities.
2. How many surgeries has Gaten Matarazzo had?
Gaten Matarazzo has undergone multiple dental surgeries to manage his CCD. He had his fourth major surgery in early 2020, which was a multi-hour procedure to remove extra teeth and expose the adult teeth that were impacted in his gums.
3. Was Dustin's condition in Stranger Things real?
Yes, the condition was written into the show specifically for Gaten Matarazzo. The Duffer Brothers, the show's creators, decided to incorporate Gaten's real-life Cleidocranial Dysplasia into his character, Dustin Henderson, making it a key part of his story and promoting representation.
4. What foundation does Gaten Matarazzo support for CCD?
Gaten Matarazzo is a vocal advocate and supporter of organizations that help people with Cleidocranial Dysplasia. He has worked closely with CCD Smiles, a nonprofit organization dedicated to raising awareness and providing assistance to individuals and families affected by the condition.
References
nidcr.nih.gov — Cleidocranial Dysplasia | National Institute of Dental and Craniofacial Research
people.com — Gaten Matarazzo on 'Embracing' His Rare Bone Condition and 'Raising Awareness'