Actor Gaten Matarazzo is not only an actor on a hit Netflix show. He is also an advocate for young people suffering from a rare disease like himself.
Matarazzo, 18, lives with a rare genetic condition that has affected the development of his bones and teeth. Called Cleidocranial dysplasia, or CCD, Matarazzo’s condition occurs in one in every million births, and can be inherited or happen due to an arbitrary genetic mutation according to the organization CCD Smiles. As an ambassador for the group, Matarazzo is speaking out about CCD to raise awareness and help those with the condition feel less alone.
“I never really felt different from anyone else throughout my childhood,” Matarazzo says. “My family helped me embrace my condition and feel confident. It never felt like an obstacle in my day-to-day life thanks to the people around me. I just want that to be the case for every kid growing up with CCD.”
CCD Smiles provides education, resources, events, and real-life stories from people like Matarazzo who are living with CCD.
“One of my favorite things about CCD Smiles is that it has provided a space where people with this condition can go and share their stories with so many others dealing with the same thing,” Matarazzo explains. “I think this can help so many people feel comfortable. It really sucks to feel alone.”
Matarazzo has also been outspoken about his personal health journey. For example, on Instagram, he has posted about multiple surgeries he has undergone for CCD. The actor explains that he “didn’t know what to expect” when sharing details about the procedures, but he hoped it would raise awareness of the condition.
“I received such a wonderful wave of support from so many people,” Matarazzo says. “And I saw that it had helped a lot of people learn about [CCD] for the first time. I like to think it’s helped some people, so I think I’m going to keep updating throughout my process.”
Through his work with the organization, Matarazzo is striving to raise awareness of healthcare costs such as surgery for CCD, which insurance companies do not always consider essential. This may mean expensive out-of-pocket costs for patients.
“I think it’s essential that people with CCD and other craniofacial disorders receive proper coverage when taking steps towards oral reconstruction and other necessary surgeries,” Matarazzo says.
Ultimately, he wants people with CCD to have the same opportunities that he has.
“I love getting to call acting my job and there are so many people who have let my condition shine and become a part of my roles,” he says. “I really look forward to playing more roles that have Cleidocranial dysplasia. I hope it helps some more kids feel confident in themselves.”