5 Facts About Cleidocranial Dysplasia, ‘Stranger Things’ Actor’s Condition

The hit Netflix show brought a rare birth defect into mainstream conversation. A U-M doctor explains the particulars.

1:00 PM

Author | Kevin Joy

Stranger Things' actor & cleidocranial dysplasia patient Gaten Matarazzo

Thanks to the sudden popularity of young actor Gaten Matarazzo and the Netflix series "Stranger Things," cleidocranial dysplasia has recently come into the spotlight.

The rare genetic condition, which affects Matarazzo and others and is marked by the underdevelopment of bones and teeth, hasn't gotten much attention until now.

SEE ALSO: Helping Other Kids Understand Your Child's Craniofacial Differences

The reason: "It happens to one in 1 million people," says Christian Vercler, M.D., a plastic surgeon with the Craniofacial Anomalies Program at University of Michigan C.S. Mott Children's Hospital.

By comparison, other craniofacial differences — such as cleft lip and palate, found in about 1 in 700 births, Vercler says — are better known because of their higher rates of occurrence.

The impish 14-year-old Matarazzo's role as Dustin on "Stranger Things" not only won him scores of fans but also showcased his ability to transcend the disorder.

"It can be a very difficult condition to have … [but] I feel like I'm raising awareness for it," he told People magazine in an interview. "It makes me feel good."

Vercler, who has worked with cleidocranial dysplasia patients, explains more about the disorder.

Characteristics can vary: People with cleidocranial dysplasia are born without or with only partial collarbones, giving them sloped shoulders that can rotate unusually forward (a trait Matarazzo jokes in interviews that some people find "cool"). They also will not develop a full set of teeth; some may never get any.

SEE ALSO: The Dangers of Untreated Concussions in Kids' Sports

Other symptoms, according to the National Institutes of Health, can include scoliosis, a larger forehead than usual and a delayed closing of the fontanelle. Such signs aren't always evident in affected babies. "Generally, you pick up on it as a kid is growing," Vercler says.

It's acquired genetically: The disorder can be passed down from either parent in an autosomal dominant manner, so if only one parent has the mutation (in this case, of the gene RUNX2), a child can inherit it. "The child has a 50-50 chance of getting it," Vercler says.

In a third of cases, however, no mutation of the RUNX2 gene is found, leaving the cause unknown.

Some cases require surgery: Some people with cleidocranial dysplasia could be candidates for surgery — namely, to correct severe scoliosis or procedures to change the head shape. Matarazzo has mentioned having had several mouth surgeries, for example.

Still, every case is different: "Usually, I don't have to operate on these children," Vercler says.

Bone health and dental function are compromised: Because the mutated RUNX2 genes affect bone growth, osteoporosis may develop at an early age. This can impede corrective dental surgery in adulthood because the bones can be too weak to hold implants in place, Vercler says.

Most people instead rely on dentures to mimic the appearance and function of real teeth.  

Life often continues as normal: Cleidocranial dysplasia doesn't typically affect cognition and physical aptitude — as demonstrated by Matarazzo's lively onscreen performance. And other children needn't fear the birth defect or use it as reason to exclude kids from activities.

Notes Vercler: "We usually don't impose any activity restrictions. We encourage them to do all the things that they love."

Photo credit: Netflix

More Articles About: Bones, Muscles & Joints Growth and Development Children's Health
Health Lab word mark overlaying blue cells
Health Lab

This article is from the Health Lab digital publication.

Media Contact Public Relations

Department of Communication at Michigan Medicine




Get a weekly digest of medical research and innovation, straight to your inbox.

Featured News & Stories pediatrician talking with mother at exam questions
Health Lab
Checklist for the checkup: Some parents may not be making the most of well child visits
While many parents keep recommended well visits with their child’s primary provider, some may consider more proactive steps to make checkups as productive as possible
gas stove pot cooking
Health Lab
Is your gas stove really hurting you and your family?
A pulmonologist discusses the risks and offers tips for protecting your health in your home
Health Lab
For boy with cerebral palsy, surgery brings improved mobility
The spinal nerve procedure has been shown to provide an effective decrease in muscle spasticity long term.
pregnant stomach with yellow dots and blue undertone lab note
Health Lab
Few pregnant people who died of overdose, suicide in Michigan received proper treatment before death
A review of maternal deaths suggests most individuals had documented behavioral health conditions but only one-third received appropriate pharmacologic treatment before death
collage of photos like kid with bloody nose heart rythm ontop of a body, doctor cartoon helping patient, kid lying down sick and more.
Health Lab
The 10 most popular stories of the year
Here’s what topics resonated with most readers of the Michigan Health blog. Can you guess what they were?
2 images: Seth Kent sitting in an exam room and in his kitchen.
Health Lab
Teen can eat again following specialized minimally invasive procedure
C.S. Mott Children's Hospital is among few sites in the country to now offer non-surgical “POEM” procedure for pediatric patients to treat swallowing disorder achalasia.