What is CCD?

Cleidocranial dysplasia (CCD), is a rare genetic condition caused by a mutation in the RUNX2 gene, which affects bone and dental development. It can lead to characteristics such as underdeveloped or missing collarbones, delayed tooth development, extra teeth, and variations in the skull and facial bones. CCD does not typically affect intelligence, and many people with the condition lead full, active lives with proper care.

Gaten’s Diagnosis and Personal Experience

Gaten Matarazzo was born with CCD and has spoken publicly about how it has shaped parts of his life and career. From a young age, the condition affected how his teeth developed and contributed to experiences with dental surgeons and orthodontic care. He has described how finding dentists familiar with CCD was challenging when he was younger.

Matarazzo has said that he has a mild case of CCD, adding that the condition has not defined him in a negative way but has given him opportunities to advocate and share awareness. He has explained that his CCD has not prevented him from doing everyday activities and credits the supportive people in his life for helping him feel confident.

CCD and Stranger Things

When Gaten was cast as Dustin Henderson on Stranger Things, the show’s creators incorporated CCD into the character’s storyline after learning about Gaten’s real-life experience. That on-screen inclusion helped raise public awareness of CCD, including scenes that reflect common features such as dental differences and a lisp.

Advocacy and Awareness Work

Gaten uses his public platform to help raise awareness of CCD and to support others living with the condition. He is involved with CCD Smiles, a nonprofit organisation that helps individuals with CCD access dental care and connects families with medical professionals familiar with the condition. His advocacy includes public speaking and fundraising, with a focus on educating both families and healthcare providers about the realities of living with CCD.

What He Has Shared

In interviews and public appearances, Gaten has highlighted that:

• CCD affects bone and dental development, including the timing and number of teeth.

• His own CCD influenced casting decisions and became part of his character’s arc in Stranger Things.

• He hopes his openness helps others feel less alone and encourages broader understanding of rare conditions.