Heard of Cleidocranial Dysplasia? Learn About It Here

Heard of Cleidocranial Dysplasia? Learn About It Here
Posted on 10/16/2016

If you love Netflix, binge-watching, Stephen King, or '80s cult hits, chances are good that you watched the Netflix show "Stranger Things" in the summer of 2016. Even if you didn't, you've probably seen pictures of some of the show's adorable child actors, including Gaten Matarazzo, who has curly hair, a broad smile, and a rare condition that affects the bones and teeth: cleidocranial dysplasia.

Although a younger Gaten had roles in productions of shows like Les Misérables, he wasn't a stranger to being turned away from acting roles because of the lisp his condition causes. But in "Stranger Things," the writers worked his dysplasia into the script and-rightfully-didn't shy away from letting an actor with a rare genetic disorder have the same opportunities as other actors.

Cleidocranial dysplasia, which is also known as Marie-Sainton syndrome or Scheuthauer-Marie-Sainton syndrome, only affects one in every million children in the world, so only a handful of kids in the United States has it.

Because the condition is so rare, it's hard for parents of kids with the disorder to get information about it or feel any support, but Gaten's recent media visibility has helped bring attention to this rare condition. Below, we'll fill you in on this genetic disorder, including what causes it and what being born with the condition means for a child's teeth.

What Is Cleidocranial Dysplasia and Why Does It Happen?

Cleidocranial dysplasia is a genetic disorder that children usually inherit from their parents. If one parent has this disorder, they have a 50% chance of passing the chromosome that caused it on to their children. However, the condition can also occur spontaneously. Since each child only has a one in a million chance of being born with this condition, this specific genetic mutation doesn't happen often.

People with this disorder experience the following symptoms and signs:

  • They're born with shorter or missing collarbones. Because of the oddly shaped collarbones, they have smaller, narrower chests and shoulders.
  • They're usually shorter than average. Girls with the condition are around three inches shorter than the average height for girls, and boys are around six inches shorter than the average height for boys.
  • They often have knock-knee, or a disorder where the legs angle towards each other so the knees knock together, and flat feet, which means their arches aren't high enough.
  • The gaps between their skull bones, which are called fontanels, don't seal together as early as other children's fontanels.

Kids with this condition have a higher chance of developing osteoporosis later in life.

How Does Cleidocranial Dysplasia Affect a Child's Teeth?

The reason Gaten Matarazzo was denied so many roles probably relates to how the condition changes a person's smile:

  • The primary teeth take longer to erupt and usually don't start emerging at six months like the teeth do for children without the condition.
  • The primary teeth also take longer to start falling out than they would in someone who doesn't have the condition, which means older children still have smaller teeth that make them look younger.
  • The permanent teeth take longer to erupt, so children and young adults often go through a period without any teeth once their primary teeth start to fall out.
  • The primary and secondary teeth both have a pointier shape instead of a symmetrical, square shape with smooth edges.
  • Extra teeth might grow in, accompanied by gingival cysts.
  • The jaw might be slightly smaller than usual. The jawbones and teeth are also misaligned.
  • A few people with the disorder are born with a cleft palate.

These issues usually mean that people with cleidocranial dysplasia have several sets of dentures. Primary teeth are crucial to a child's development-they help kids learn to speak and eat properly, so missing teeth is a big deal and should be addressed by a dentist.

Fortunately, in this day and age, lab technicians can easily make comfortable, functional dentures that look just like normal teeth. Dentures help kids fit in and feel less self-conscious as they grow up. Minor surgery for cleft palates and orthodontia to correct misaligned jaws can help treat the dental issues associated with cleidocranial dysplasia.

What If My Child Has Cleidocranial Dysplasia?

Chances are high that your child doesn't have this disorder. If your kids weren't born with it, they can't develop it later in life, so you don't need to worry.

At the same time, it's helpful for everyone to be educated on rare genetic disorders like this one. The more you know about conditions that could impact those around you, the more empathetic you can be, and the more compassionate and accepting you can teach your child to be.

If your child is one of the dozens of kids with this disorder, it's easy to feel alone. You might worry that you won't be able to get proper treatment for your child. However, because there are so few people with this condition, finding and connecting with these individuals for support is possible.

There are also many doctors who are qualified to provide support, and your dentist can ensure your child's teeth develop as normally as possible.

Do you have other questions about your child's teeth or conditions that could impact their development? Call our children's dental office to get more info.  

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