Updated 05 March 2018

How this Stranger Things actor is dealing with a rare condition

We look into how teen TV actor, Gaten Matarazzo, is raising awareness about Cleidocranial Dysplasia – the rare disease he suffers from.

In 2016, Gaten Matarazzo was launched into the spotlight by playing Dustin Henderson in the Netflix series Stranger Things, but what many people didn't know was that both Matarazzo and his character have a rare disease called Cleidocranial Dysplasia (CCD).

Matarazzo openly speaks about his condition and is working worked towards raising awareness about CCD. He told People how rare the condition is – and since then he's been receiving messages from people who also have the disease.

He added how thrilled he is about the feedback. "A lot of people messaged me saying things like, 'You made me feel better about myself – that you can show that you have this condition on TV and embrace it.'"

What is CCD?

Cleidocranial Dysplasia (CCD) is the flawed development of skull bones, collar bones (clavicles), but may include dental complications and other defective skeletal development, according to the Genetic and Rare Diseases Information Centre.

Cleido is a medical prefix meaning "clavicle" and cranial means "of or relating to the skull or cranium", while dysplasia refers to "abnormal growth or development", according to the Merriam-Webster medical dictionary.

The National Craniofacial Association states that the condition is characterised by the poor or unusual development of certain bones in the skull, along with the flawed development or complete absence of collar bones (clavicles).

But it may also affect other parts of the body and their functionality – for example, women who have the condition may never be able to give birth naturally and may be forced to have a Caesarean section due to a narrow pelvis.

Males and females are equally affected by the condition; it isn't gender specific.

CCD Cleidocranial dysplasia Gaten Matarazzo Strang

How does this happen?

The disorder is caused by a gene mutation on one of the chromosomes. The affected gene is responsible for commanding the production of a protein which plays an important part in teeth, bone and cartilage development, according to the National Library of Medicine.

It is usually inherited as an autosomal dominant genetic trait, which means the person has one copy of the mutant gene and one normal gene on a pair of autosomal chromosomes.

Autosomes are the chromosomes one to 22 and do not include the sex chromosomes, X or Y.

This also means that the person who has an autosomal dominant condition has a 50% chance of passing it on to their offspring.

Treating CCD

Like many rare diseases, CCD is embedded in the genes of the person who has it and the condition itself cannot be treated or cured.

Secondary conditions as a result of CCD need to be addressed. Matarazzo says he's fortunate because he's only needed a few dental operations.

He told The Doctors that his milk teeth did not fall out when they were supposed to and he has many more teeth than the average human.

The National Organisation for Rare Disorders states that headgear may be needed to protect the skull while the bones fuse together.

Like Matarazzo, those with CCD may have hyperdontia or supernumerary teeth, a condition where extra teeth grow anywhere in the mouth. This needs to be addressed by a dentist and possibly an orthodontist.

CCD Cleidocranial Dysplasia supernumerary teeth hy

Matarazzo has joined forces with the organisation CCD Smiles, which aims to help children with CCD receive the necessary treatment for their hyperdontia.

In the clip below he tells of how people with CCD can do "cool" things like move their shoulders much closer together than someone who doesn't have the condition, but also speaks about how expensive dental treatment is.

Treatment is be extremely pricey if they need major surgery to remove extra teeth and straighten out the others – to help them smile with confidence.

Matarazzo also speaks about the team of craniofacial healthcare professionals he sees at the Children's Hospital of Philadelphia and how he needs to wear "an appliance" with chains to pull his "adult teeth" down.

Matarazzo says that he got the part on Stranger Things because of his condition and the fact that the creators of the show wrote his condition into the character of Dustin Henderson.

He also mentioned to Daily Mail that he told the directors about his condition when he went for the audition. They told him they liked the way it makes him unique.

Do you or someone you know have a rare condition? Share your story with us by emailing and we may publish your story. Please indicate if you wish to remain anonymous.

Images: Main image: Gage Skidmore/WikiMedia Commons. X-ray: WikiMedia Commons/US National Library of Medicine. Video: CCD Smiles/YouTube