Cleidocranial Dysplasia was a relatively unknown condition in popular culture until one of the stars of the hit Netflix series Stranger Things went public. Gaten Matarazzo, who plays the character “Dustin”, recently came out and said he suffers from Cleidocranial Dysplasi (CCD).
CCD is a condition which affects the development of teeth and bones. Gaten stated in a recent interview that he does not have a collarbone and still has his baby teeth, which gives him a distinct lisp when he speaks. He’s also forced to wear false teeth in the front of his mouth for aesthetic reasons.
Gaten originally found it very hard to land acting jobs in Hollywood due to his false teeth and lisp. When he was cast in Stranger Things, the writers decided to write his condition into the script, so the character he plays suffers from CCD as well. Since he went public with his condition, many people who have CCD sent him emails thanking him for his awareness campaign.
What is Cleidocranial Dysplasia?
Cleidocranial Dysplasia is a somewhat rare congenital skeletal disorder that affects 1 in every 1 million people. It is characterized by babies being born with noticeable “soft spots” on the top of their head, underdeveloped or no collarbone, along with teeth and bones that don’t fully mature. Characteristics of this condition can include:
- Short stature
- Wide nasal bridge
- Protruding jaw and brow bones
- Premature closing on coronal suture
- Delayed closure of the space between the bones of the skull.
- Dentures would be put in place over unerupted teeth for aesthetic and speech reasons.
- Teeth need to be manually removed by a dentist as they erupt from the gums. This means multiple visits to the dentist chair as very little bone structure would be left if the unerupted teeth were extracted all at once.
- There is some disagreement amongst doctors regarding the removal of primary or supernumerary teeth. Some doctors feel that if those teeth are removed, it will not promote eruption or unerupted permanent teeth. They also feel that permanent teeth might be challenging to extract because of the roots being malformed.
For many people who suffer from CCD, the most difficult part is the multiple oral surgeries that they will need to undergo. In some cases, baby teeth do not fall out naturally and they must be manually pulled by the dentist. The costs of the dental treatments can be staggering. Medical and dental insurance won’t cover the cost of the treatments either.
Currently, medical science does not recognize any link between what the mother did during her pregnancy and the onset of CCD in the child. It is thought to be transmitted as an autosomal dominant trait – in other words, it’s completely genetic. Scientists also think that if both parents are unaffected by the condition, then a spontaneous genetic mutation must have occurred for the child to be born with it. However, someone with CCD has a 50% chance of passing it onto their children.
What Can Be Done to Help?
Dental problems are usually the most significant and noticeable aspects of CCD. As such, it’s critical that patients get proper dental treatment as they grow older. There are a few suggested treatment options that can help improve both the quality of life and condition of the sufferer:
The biggest barrier to successful treatment is the overall cost of all the dental procedures that are required. Insurance will cover very little if any of the treatment procedures. Many families cannot afford such huge medical bills and are resorting to having their children live with the condition as best they can. Fortunately, there is an online support community in the form of Facebook groups, forums, and websites that are dedicated to people who suffer from CCD.
As time goes by, new advances in procedures to treat CCD are being developed. Thanks to Gaten from Stranger Things bringing this condition to the forefront of popular culture, research and breakthroughs should speed up and improve as time goes by. A charitable organization in Utah was set up to financially help people who suffer from this condition.
How to Seek Help?
While insurance companies may not foot the bill for dental treatments, there are still a wide variety of economical options available to CCD patients. There are reasonable payment options available that will allow you to begin treatment immediately and pay for it over time with payments that fit your monthly budget.
If you have any questions regarding Cleidocranial Dysplasia or how Water Tower Dental Care can help, contact us today at (312) 787-2131 to set up a consultation appointment with one of our qualified dentists. Together we can help you or your child regain their smile and confidence!