Gaten Matarazzo has been a fan favorite as loveable sidekick Dustin on Netflix’s supernatural hit show Stranger Things, and his newfound popularity has also given him the platform to speak openly about living with cleidocranial dysplasia.
The rare genetic disorder affects the development of bones and teeth, and can be of varying severity.
“There’s a one in a million chance that you have of getting it – most likely you get it from a parent, but it just happened for me,” Matarazzo, 14, tells PEOPLE. “I have a very mild case so it doesn’t affect me as much, but it can be a very difficult condition to have.”
Many of those affected have to undergo back and face surgeries, and Matarazzo says he had to have a few mouth surgeries for his own condition. There is one “cool” part about his condition, according to the actor. Because cleidocranial dysplasia often causes an underdeveloped clavicle, many with the condition can move their shoulders into the midline of their bodies.
“People are like, ‘Well you can do these cool things with your shoulders,’ ” he says. “That part’s cool about it.”
Being open about his cleidocranial dysplasia has also allowed him to be an inspiration to others with the condition.
“The feedback has been great,” he says. “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.”