‘Stranger Things’ Star Opens up (Again) About Cleidocranial Dysplasia 

We’re no stranger to ‘Stranger Things’ breakout star Gaten Matarazzo, who captured our attention playing Dustin on the hit show — but he also captured our hearts when he became vocal about his cleidocranial dysplasia (CCD) diagnosis.

CDD has left him with teeth stuck in his gums and no collarbones — but Gaten has used his visiblity to start a dialogue.

In fact, we’ve written about him before!

Last month, Gaten went public about his fourth surgery — fostering yet again a new conversation about his journey living with a rare disease.

Gaten is our advocacy MVP!

What is Cleidocranial Dysplasia?

CCD is a skeletal condition that affects the development of bones and teeth. It is very rare, occurring in approximately 1 in 1 million people, but is likely under-diagnosed due to individuals who have mild symptoms.

Some symptoms include:

  • Dental abnormalities, like delayed loss of baby teeth, delayed growth of adult teeth, misaligned teeth, extra teeth, cysts, and/or unusually shaped teeth
  • Underdeveloped or absent collarbones
  • Narrow and sloping shoulders; ability to touch the shoulders together at the front of the body
  • Short stature
  • Facial features: wide, short skull; wide-set eyes; small upper jaw; flat nose

To learn more about CCD, click here.

Advocate

Gaten has taken what can be a difficult and personal journey and has used it to create awareness. Back in January, Gaten posted on his Instagram:

Surgery number 4! This is a big one! To learn more about Cleidocranial Dysplasia and how you can help those with the condition you can go to ccdsmiles.org.

And this hasn’t been the first time he’s been so public about his progress.

In 2018, he was very candid about some of his struggles, in an interview on the show The Doctors :

“It’s one of the reasons why I haven’t been getting roles, because of my lisp, and the teeth situation, and my height. That affected pretty much everything. I would go three times a week for auditions all the time and get constant ‘no.’ ”

To see more of that interview, click here.

But ‘Stranger Things’ not only gave him his lucky break, but even wrote his CCD diagnosis into the show!

Gaten’s character often gets singled out for his missing teeth, but Dustin is brave like Gaten, and educates his friends about CDD — calling it by its name.

And just like that, Gaten became an advocate and gave a voice to the voiceless.

“The feedback has been great,” he said. “A lot of people were messaging me saying, ‘You made me feel better about myself, that you can show that you have this condition on TV and embrace it.’ I feel like I’m raising awareness for it. It makes me feel good.”

In fact, according to Oklahoma State University research, Gaten’s advocacy and CCD’s subsequent exposure boosted Google searches of the condition by nearly 94%!

Gaten now works with CCD Smiles, a non-profit organization that raises money and awareness for people with the condition.

Click here for a video feature about Gaten, from CNN.

Thank you, Gaten, for your advocacy! Keep advocating, and we’ll see you in Hawkins 😉


Do you look up to a public figure with a rare disease? Share your stories, thoughts, and hopes with the Patient Worthy community!

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