Stranger Things Star Gaten Matarazzo Talks Cleidocranial Dysplasia

With the hit TV show Stranger Things now in its third season, fans are already looking forward the season 4 that’s due to follow in 2021. Loveable Justin, played by Gaten Matarazzo, has a noticeable lisp and this has led to the actor speaking out about his rare disorder.

Gaten & Netflix’s Stranger Things

This is a condition that Matarazzo shares with his Stranger Things character, Dustin. When bullies made fun of Dustin’s toothless lisp in the very first episode, with Dustin replying that it’s Cleidocranial Dysplasia, many viewers at the time were probably unaware of the rare bone disorder.

It’s not often we see characters with chronic illnesses, disabilities or rare conditions, unless that’s the focus of the film/show. It’s all the more rare that the actor/actress actually has that condition; this isn’t a person playing a person with Cleidocranial Dysplasia. Thankfully Netflix embraced it, building Gaten’s condition into his character, Dustin.

Unsurprisingly perhaps, it’s been found that each new season has sparked a jump in online searches for Matarazzo and Cleidocrania Dysplasia. So what is it?

What Is Cleidocranial Dysplasia?

Cleidocranial dysplasia (CCD) is also referred to as cleidocranial dysostosis. It’s a rare genetic disorder that affects the development of bones and teeth. Those with CCD therefore often have dental abnormalities and underdeveloped or fully absent collarbones.

Lack of collarbone is what allows Matarazzo to make his shoulders touch together in front of him.

Other features can include delayed closing of the spaces found between the skull bones, osteopenia or osteoporosis (thinning bones), recurrent ear/sinus infections, and hand bone abnormalities.

Cleidocranial dysplasia is usually the result of mutations in RUNX2, a gene that provides the body with instructions to produce a protein that’s required for bone and cartilage development. CCD is inherited in an autosomal dominant fashion, meaning a change in a single copy of the responsible gene within each cell is adequate for producing this condition’s features. It’s thought that the RUNX2 protein serves as a ‘switch’ in regulating other genes that are involved in developing certain cells (osteoblasts) that build bones. RUNX2 mutations therefore lead to a shortage of normal protein, thus affecting normal cartilage and bone development and maintenance. 

The NIH Rare and Rare Diseases Information Centre has further information.

Gaten’s Talks About CCD

Having a character with CCD and Gaten speaking up about his experience has allowed for greater awareness of this rare condition.

When talking on The Doctors, Gaten said how he’d struggled getting roles previously because of his height, lisp and “teeth situation”. Then he got cast for Stranger Things.

“I started explaining what it was,” he said, “and then once I got the part, they said they’re gonna incorporate that and use it in a realistic way. They asked me if it was okay if the kids in the show had bullied me because of it. I said it’s totally cool. It’s realistic.”

Are you a Stranger Things fan? Is this condition one you’d heard of before?

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34 Comments

  1. February 25, 2020 / 5:19 pm

    Hello Caz
    I had no idea about his disorder. Never heard of it before your post.
    I watched the first two season, haven’t had a chance to see season three.

    Hope you are well.
    xo

    • February 28, 2020 / 3:00 pm

      I hadn’t heard of it until recently, either. It’s good to be able to learn more about rare conditions like this, though I wish children would as well because this is something that would be easy pickings for bullies. I’ve not seen season 3 yet either but it’s on the to-watch list – hope you enjoy it when you get the chance to check it out, too! Thanks for the comment, Drew. I hope you’re taking good care of yourself.xx

  2. February 25, 2020 / 5:47 pm

    Glad he is able to raise awareness. I did not know he had the condition. Hats off to Netflix for giving Gaten the opportunity to become a solid actor. He is now a popular and seasoned young actor.

    • February 28, 2020 / 3:25 pm

      Agreed, hats off to Netflix & Gaten. He’s definitely got a good step on the ladder in the industry now with the way Stranger Things has exploded. Thanks for the comment, Darnell.x

  3. February 25, 2020 / 6:32 pm

    wonderful post, Caz! so important that we all have compassion for each other — we never know what goes on with those around us until we get to truly know them.

    • February 28, 2020 / 3:26 pm

      Very true, da-AL. Kindness and thoughtfulness always. Thanks for the comment xx

  4. February 25, 2020 / 8:09 pm

    I didn’t know about this at all. I’ve learned so much visiting you. Thank you.

    Have a fabulous day and rest of the week. ♥

    • February 28, 2020 / 3:28 pm

      You’re welcome, I’m glad it could help you learn something new. I hadn’t known either until more recently. Hope you have a lovely weekend ahead, Sandee! xx

  5. February 25, 2020 / 8:41 pm

    Informative post Caz didn’t know about this disorder. Glad he found an opportunity and spreading awareness .

    • February 28, 2020 / 3:29 pm

      I’m really pleased for him, too. The lisp, the teeth, it’s nothing – he’s an amazing young dude with talent and I’m glad he’s used his position to raise a little awareness, too. Thanks for commenting, Nisha xx

  6. February 25, 2020 / 8:59 pm

    Stranger Things is one of my favourite shows and I did know about Gaten condition, it’s so nice that he spoke about it so freely. It was even on Italian news which is AWESOME but never happens. I didn’t know the full detail of CCD so thank you for explaining it to me

    • February 28, 2020 / 3:31 pm

      Wow, that’s great about the Italian news. I learned more when I read up on the condition and as you say, it’s great he’s been willing to speak up about it. Thanks for the comment lovely xx

  7. February 25, 2020 / 9:32 pm

    I definitely hadn’t heard of it but I really appreciate all manner of disorder and disability being woven organically into the stories we tell because most of us are just going about our lives. I like that his character isn’t defined by it, he just happens to have it. It’s not ignored, but it’s also not the only thing or even the most interesting thing about him. And that’s how it should be.

    • February 28, 2020 / 3:33 pm

      That’s what I think works so well, too. It’s in-built, and that’s quite uncommon. If a film features a character with a condition it’s usually because the film evolves around that. This doesn’t, it’s just organic, as you well put. x

  8. February 25, 2020 / 10:39 pm

    No, Caz; hadn’t heard of this condition! What a lovely personality is Gaton; so open and warm.
    I also hadn’t heard of ‘Stranger Things’. I’ll check it out next time I open Netflix!
    You are such a marvel; opening us all to the diversity of human experience. I’d have to say that Gaton is one such individual, too. How brave of him. I’m sure he must face his inner demons constantly.
    Well done to him and you!
    xoxoxo

    • February 28, 2020 / 4:26 pm

      Stranger Things is a very popular one, in part I think because it’s so different and very distinctive. It’s amassed itself quite the cult following. I agree with you there about Gaten, really sweet, warm guy. I’m really glad you liked this post and that it could show you something new. Thank you, Carolyn  ♥ xx

  9. February 26, 2020 / 1:37 pm

    I’ve never watched an episode of Stranger Things, but my granddaughter loves it, it’s her favorite show. I’ve never heard of his condition. Thanks for posting this and raising our awarness. xoxo

    • February 28, 2020 / 4:37 pm

      Your granddaughter is one of many that have fallen in love with Stranger Things, it’s got a pretty impressive following. I hadn’t heard of this condition until more recently either so I’m glad to be able to share something new here and raise a little awareness. Thank you for the comment, Masha  ♥ x

  10. February 26, 2020 / 7:52 pm

    I hadn’t heard of it, but I think it’s great he landed this role – despite it. We should definitely have more books and films featuring characters with chronic illnesses, disabilities or rare conditions – but without it being the main focus of the story, if you get me. 🙂

    • February 29, 2020 / 5:55 pm

      I’m glad, too. I bet they are as well given how popular a character he’s turned out to be. That’s what I find so good about this too – they’ve neither dodged or focused on the condition, just weaved it in. That’s definitely what I’d like to see more of in books, TV and films. Thanks for the comment lovely.xx

  11. February 27, 2020 / 11:01 am

    I’ve never seen Stranger Things or heard of the young actor. And no, I’d also not heard about the condition. But good on him for getting out there and talking about it, and to the programme’s writers etc for including it in the storyline. Sadly, the bullying would be realistic. So hopefully they got the message across about the rare condition and about bullying.

    There are so many rare diseases, they could all use some recognition.

    • February 28, 2020 / 4:57 pm

      It’s a good show but what’s great is that the condition is built in to the character, it’s neither focused on nor ignored. I wish children could learn more about this because that’s where bullying comes into it. Thanks for the comment, Liz  ♥ x

  12. February 27, 2020 / 2:20 pm

    I had no idea he had this condition! It makes his character even more interesting now knowing this. My daughter and I both became addicted to Stranger Things and now we won’t let my husband cancel Netflix! It’s the only thing we ever use Netflix for. LOL!

    • February 28, 2020 / 5:06 pm

      Hahah it’s an addictive show! How did you like the latest season? I’ve not seen the 3rd yet but I’m looking forward to it. I’m glad this made you aware of something you hadn’t known before! xx

  13. February 27, 2020 / 5:50 pm

    He is an amazing singer too! So much talent. I really like that he sees his stardom as an opportunity to raise awareness for this condition. Excellent post.

    • February 28, 2020 / 5:08 pm

      I hadn’t heard him sing! He’s a very cool young dude and it’s great to see the talent and warmth are being used for good. Glad you liked the post, thanks for the comment, Christy!  ♥ x

  14. February 27, 2020 / 6:10 pm

    You just made me smile with this post Caz! I simply adore seeing how they are bringing awareness not only to this rare condition, but also to the bullying of individuals with a physical condition of any kind!

    Isn’t it absolutely amazing how one gene can completely change how our body forms and functions?? I find that truly fascinating. We are such incredibly complex beings.

    I’ve never seen Stranger Things, but consider it a blessing Gaten is on the show. My hope is we will see much more representation of chronic illness, disabilities and other conditions in film and show. I believe we could do a whole lot to advance social awareness if superficiality and shallowness were removed from the equation. Talent has no bounds in body type, shape, color, medical status or anything else. We are all beautiful and born with a purpose! I hope each person has the opportunity to live out theirs, no matter the circumstances. 💕

    Love you Caz. Thank you for teaching me something new again today!

    • February 28, 2020 / 5:40 pm

      You’re right, our genes are so intricate and fascinating when you consider how it all works. Often very cruel, but fascinating nonetheless. I have that same hope too, for seeing more conditions in the media and on TV/in films. It’s great the way it’s been done with Stranger Things because it’s been build into the character; the condition isn’t avoided but nor it is focused on. And of course Gaten is doing a brilliant job raising awareness outside of the show using his fame as a platform to reach more people. He’s a very talented young dude and I love your last part about how we’re all beautiful and born with a purpose – no condition, illness, race, size, shape, nothing should affect us living out our lives the best we can  ♥ Thank you for the fantastic comment, Holly!xx

  15. February 29, 2020 / 1:11 pm

    My son has an invisible disability. I’m glad he’s using his star strength to educate people on his disorder.

    • February 29, 2020 / 2:04 pm

      I’m sorry to hear about your son. I hope he’s managing as well as possible and getting whatever support he needs ♥ I’m glad Gaten is using his stardom as a platform to educate and raise awareness, too, and in a very professional manner. Thank you for your comment.x

  16. March 3, 2020 / 12:10 pm

    Well I guess I have even more reason to love Gaten now! I had no idea. I don’t even remember it being discussed and had no idea that a lisp might be an indication of such a condition. I love that they modified his character to include it and that the young actor speaks about his condition to raise awareness. There are more and more celebrities talking about their conditions and it’s a trend I love. People have no idea how not rare “rare disease” actually is. There are thousands of conditions affecting millions of people.

    • March 6, 2020 / 12:44 pm

      Absolutely! And you’re right about the “rare” part, too. Some are ultra rare (like one person in a whole country) but the majority of conditions referred to as rare still impact a lot of people, yet little is known or understood about the conditions on a wide social scale. I think it works well in the show because they’re neither drawing attention to it or ignoring it. Thanks for the comment, Mykie! xx

  17. March 4, 2020 / 3:13 am

    I had never heard of CCD, and before your post, I didn’t even realize that’s what Gaten Matarazzo has! I love that the producers of Stranger Things worked that into his character so it can raise awareness.

    I watch Stranger Things and absolutely love him! If I was a 12 year old girl, I guarantee I would have the biggest crush on him. He was totally my type as a little gir.

    • March 6, 2020 / 12:45 pm

      I hadn’t known until more recently either, and I learned a lot researching for this post. He’s one cool young dude. xx

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