"There’s a one in a million chance that you have of getting it." 

By Leah Groth
January 30, 2020

Stranger Things star Gaten Matarazzo revealed Wednesday he underwent a fourth surgery for his genetic disorder—and it was "a big one."

Matarazzo, 17, shared the news on Instagram: "Surgery number 4! This is a big one!" he wrote, captioning an image of himself giving a thumbs-up sign from his hospital bed. In addition to sharing the news, Matarazzo also used the opportunity to bring awareness to his disorder—and to send out a plea to help others with the condition. "To learn more about Cleidocranial Dysplasia and how you can help those with the condition you can go to ccdsmiles.org," he wrote.

According to People, Matarazzo is doing "well" after the surgery, per his rep. Matarazzo also reportedly wanted to bring attention to just how costly procedures like this can be for those with the disorder—often costing upwards of $40,000, and not typically covered by insurance.

Of course, this surgery wasn't Matarazzo's first, but he maintains that he still hasn't had as difficult a time as many others with the condition. "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," he previously told 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.”

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What is cleidocranial dysplasia?

According to the Genetic and Rare Diseases Information Center (GARD), a division of the National Institutes of Health, cleidocranial dysplasia (CCD) is a genetic condition that primarily affects the development of the bones and teeth. Underdeveloped or absent collarbones (clavicles), dental abnormalities, and delayed closing of the spaces between the skull bones (fontanels) are the most common characteristics of the condition. However, other features may include decreased bone density (osteopenia), osteoporosis, hearing loss, bone abnormalities of the hands, and recurrent sinus and ear infections. 

CCD is caused by mutations in the RUNX2 gene, which is responsible for giving the body instructions on how to make a protein used to develop and maintain bone and cartilage, per the GARED. Inheritance of the condition is autosomal dominant, which means a change in only one copy of the responsible gene in each cell is sufficient to cause features of the condition. Sometimes it is inherited by an affected parents, while others occur as a result of a new mutation in the RUNX2 gene, which is what reportedly happened in Matarazzo's case.

There is no cure for CCD, however, it can be managed and treated in a variety of ways, including dental procedures, treatment of sinus and ear infections, use of helmets for high-risk activities, and/or surgery for skeletal problems.

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Despite having a mild case, in a 2018 appearance on The Doctors, Matarazzo confessed that it seriously impacted his life, including his career. "It’s one of the reasons why I haven’t been getting roles, because of my lisp, and the teeth situation, and my height,” he said. “That affected pretty much everything. I would go three times a week for auditions all the time and get constant ‘no.’ ”

However, his medical condition actually helped him nab his career-changing role on Stranger Things. “It really started out when I was stretching in the audition room,” he said. “They were like ‘Wait, wait, wait what did you just do?’ and I said, ‘What? I’m stretching’ and they said ‘No, do it again and they said ‘Why do you do that? Your shoulders are touching.’ … So I started explaining what it was and how I had a condition from birth that affects my teeth and everything. That’s why I was missing teeth in the first season, and I still have my appliance in right now.”

Ever since his star power exploded, Matarazzo has been raising awareness about his condition. One of the ways he does this is by working alongside CCD Smiles, a non-profit organization that raises money and awareness for people with the condition. 

“The feedback has been great,” he told People. “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.”

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