Stranger Things star Gaten Matarazzo speaks out about his experience living with cleidocranial dysplasia (CCD) — a rare genetic condition that affects the growth of collarbones and teeth.
Mediaplanet: What do you wish more people understood about cleidocranial dysplasia?
Gaten Matarazzo: I wish people would understand that having teeth is not cosmetic and it does affect a person’s well-being and health. Teeth will not come in on their own and it’s not just a matter of waiting because if you wait too long, the teeth could fuse to the jaw and you could never have your own teeth and then you would have to get implants. I need people, and specifically doctors, to understand that it needs to be done through appliances and through medical procedures and not just time. It’s not always about time. It’s about working for it.
What has been your experience living with CCD?
My experience with cleidocranial dysplasia has been pretty good, honestly. I have a very mild case of it and it hasn’t really caused me to be bullied or anything. It has benefited me in many ways because it’s basically started my acting career. It’s given me an opportunity to talk about it and not feel ashamed of it. I can still do the same things as many other kids and I can’t say the same about other people that have this condition. Thankfully my case is very mild and I can live like a normal kid but not everyone that has the condition can, and that’s why I’m talking about it, because many people are not as fortunate as I am.
How has CCD impacted your acting career?
Pretty much every part I’ve booked is because of the condition. In some way, it affects me — whether it be my height or my teeth or making me look younger. Hopefully, I can evolve from that and not just get roles because of the condition, I can play parts that don’t have physical disabilities or anything like that. I can play someone who isn’t associated with the condition. The Duffer brothers also helped a lot, when they wrote the condition into the show. They weren’t intending on having my character have the condition, but when I told them about it they liked the idea of having a character with a disability to give him more of a unique twist and make him more relatable in a way.
