Gaten Matarazzo Undergoes Surgery for Cleidocranial Dysplasia

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

In 2020, "Stranger Things" star Gaten Matarazzo revealed he underwent a fourth surgery for his genetic disorder, cleidocranial dysplasia (CCD).

Matarazzo shared the news on Instagram, saying the procedure was "a big one." Matarazzo captioned an image of himself giving a thumbs-up sign from his hospital bed. 

In addition to sharing the news, Matarazzo also brought awareness to the disorder and sent 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," shared Matarazzo.

According to People, Matarazzo did "well" after the surgery, per his representative. Matarazzo also reportedly wanted to bring attention to how costly procedures can be for others with the disorder. Often, surgery costs upward of $40,000. What's more, health insurance companies typically don't cover the costs.

Of course, the surgery wasn't Matarazzo's first, but he maintained that he still hasn't had as difficult a time as 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," Matarazzo 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."

Here's what you should know about CCD, including what causes the rare genetic disorder and how people with the disorder manage their symptoms.

What Is Cleidocranial Dysplasia?

CCD is a genetic condition that primarily affects the development of bones and teeth. The most common characteristics of CCD include the following:

  • Underdeveloped or absent collarbones, medically known as clavicles 
  • Dental abnormalities
  • Delayed closing of the spaces between the fontanels, which are the skull bones

Other features may include decreased bone density (osteopenia), osteoporosis, hearing loss, bone abnormalities of the hands, and recurrent sinus and ear infections.

What Causes Cleidocranial Dysplasia?

Mutations in the RUNX2 gene cause CCD. The RUNX2 gene is responsible for giving the body instructions on how to make a protein that helps develop and maintain teeth, bones, and cartilage.

Inheritance of CCD is autosomal dominant. In other words, a change in only one copy of the gene in each cell causes features of the condition.

In some cases, a person inherits CCD from an affected parent. In contrast, other cases occur due to a new mutation in the RUNX2 gene, which reportedly happened in Matarazzo's case.

Symptoms of Cleidocranial Dysplasia

CCD symptoms differ from person to person and can range from mild to severe. Most commonly, CCD symptoms include:

  • Tooth abnormalities, extra teeth, and malformed tooth enamel
  • Tooth decay
  • Sloping shoulders
  • Bulging of the front skull
  • Underdeveloped bones
  • Short stature
  • Hearing abnormalities or loss
  • Osteoporosis

Treatment for Cleidocranial Dysplasia

There is no cure for CCD. However, people with CCD can manage and treat their symptoms in many ways, including:

  • Dental procedures
  • Treatment of sinus and ear infections
  • Use of headgear to protect the skull
  • Surgery for skeletal problems

Living With Cleidocranial Dysplasia

Despite having a mild case, in a 2018 appearance on "The Doctors," Matarazzo confessed that CCD seriously impacted his life and 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," said Matarazzo. "That affected pretty much everything. I would go three times a week for auditions all the time and get constant 'no.'"

However, Matarazzo's condition helped him nab his career-changing role on "Stranger Things." 

"It really started out when I was stretching in the audition room," said Matarazzo. "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."

Getting Support

People with rare conditions deal with challenges that can require extra support, such as:

  • Limited information about the condition
  • Financial difficulties
  • Adjustments to daily activities
  • Social challenges and isolation
  • A wide range of feelings and emotions

Since his star power exploded, Matarazzo has been raising awareness about CCD. One of the ways Matarazzo does that 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,” Matarazzo 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.”

A Quick Review

CCD is a rare genetic disorder affecting the bones. The disorder commonly causes underdeveloped or absent collarbones, dental abnormalities, and delayed closing of the spaces between the skull bones. 

Matarazzo, who has CCD, raised awareness about CCD when he received his fourth surgery for the disorder. Financial difficulties, social challenges, and a range of feelings and emotions are only a few aspects of living with a rare condition like CCD.

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  1. People. 'Stranger Things' star Gaten Matarazzo says surgery for rare bone disorder was a 'compete success'.

  2. People. 'Stranger Things' ' Gaten Matarazzo opens up about living with rare genetic disease.

  3. National Center for Advancing Translational Sciences. Cleidocranial dysplasia.

  4. National Library of Medicine. Cleidocranial dysplasia.

  5. National Organization for Rare Disorders. Cleidocranial dysplasia.

  6. People. This Twitter exchange between Lin-Manuel Miranda and 'Stranger Things' star Gaten Matarazzo is sure to make you smile.

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