There's a new movie called Wonder coming out this weekend, about a homeschooled 10-year-old boy named Auggie (played by Jacob Tremblay) experiencing his first time in a real elementary school. Like any new kid, he struggles making friends and facing bullies, but Auggie's case is especially poignant because he was born with a condition that leaves him with visible facial differences.
According to R.J. Palacio, author of the book that inspired the film, Auggie is supposed to have a specific condition called mandibulofacial dysostosis, which is commonly referred to as "Treacher Collins syndrome." Auggie feels most comfortable wearing a NASA helmet that covers his face, but he learns how to "stand out" through the help of his new friends, a supportive teacher (played by Daveed Diggs), and loving parents (Julia Roberts and Owen Wilson).
While Wonder doesn't premiere until Friday, there has already been some backlash to the film from the craniofacial-conditions community, who have called it "inspiration porn." Rather than cast a person with a craniofacial condition to play Auggie, for example, the character is portrayed by Tremblay who wears prosthetics and special-effect makeup to look the part. That said, other advocacy groups have applauded the film for highlighting a lesser-known category of congenital conditions, and for encouraging empathy and inclusion in classrooms.
For a better understanding of craniofacial conditions, especially the one at the center of Auggie's story, here are a few key things you should know:
How common are craniofacial conditions?
Depends which one you're talking about, because there are dozens of conditions that fall under the umbrella of craniofacial disorders. And it's tough to say exactly how many people are affected by TCS specifically, because some people may never get diagnosed. According to the National Organization for Rare Diseases (NORD), it's estimated to that between 1 in 10,000 and 1 in 50,000 people in the general population have TCS, which is pretty rare.
What is Treacher Collins syndrome?
Treacher Collins syndrome is a congenital condition that impacts the development of bones and tissues around the face, ears, and eyes, according to the National Institute of Health. It's named after the ophthalmologist who first discovered the condition in the 1900s, Edward Treacher Collins, according to NORD.
TCS can vary in severity, but people with it typically have distinctive facial features, such as underdeveloped cheek bones that appear "flat or sunken," and a very small jaw and chin, according to NORD. In some cases, people with TCS may be born missing parts of their ears, or have ears that are "crumpled or rotated." They may also have eyelid abnormalities (including missing eyelashes), a hairline that extends to their cheeks, and a cleft palate, according to MedlinePlus.
What causes it?
Interestingly, TCS is a genetic condition, but people with it usually don't have another family member who's affected by it, according to MedlinePlus. We know that TCS is caused by mutations or changes in one of three genes involved in developing a person's face. Mutations in these genes decrease the amount of rRNA a person makes, which is the molecule responsible for creating proteins and cells. It's unclear exactly how lower levels of rRNA contribute to TCS, but researchers believe that it can "trigger self-destruction" of special cells that grow facial bones and tissues, according to NORD.
Does TCS cause any health complications besides facial changes?
This disorder manifests itself in a lot of different ways, and all across the internet, there are several "real life Auggies" sharing their stories about what it's like to have TCS and the challenges they face. About 40 to 50% of people experience hearing loss as a result of TCS, according to a 2004 study. Some people may have vision loss or issues due to their eye shape. Similarly, because people with TCS have underdeveloped jaws, they may also have difficulty eating or breathing, according to NORD. Only an estimated 5% of people with TCS also have developmental or neurological delays, but occasionally the hearing issues can interfere with speech development.
How is Treacher Collins syndrome treated?
There's no cure for TCS, so people see a variety of doctors to manage or accommodate their facial irregularities. Wearing glasses or contacts, hearing aids, or dental implants are all common, but many cases require several surgeries. This is something Wonder gets right. In the trailer, Auggie says he's had 27 surgeries, "to help me breathe, to see, to hear without a hearing aid." (Later in the trailer, Auggie's friend asks if he's ever considered plastic surgery, to which he says, "This is after plastic surgery. It takes a lot of work to look this good.") While that sounds like a ton for a 10-year-old, this is common, and most people with TCS will get their first surgery between the ages of 1 and 2, according to NORD.
As they age, people with TCS may be treated by genetic counselors, ophthalmologists, audiologists, otorhinolaryngologists (ear, nose, and throat surgeons), speech pathologists, orthodontists, social workers, and plastic surgeons, according to the American Academy of Ophthalmology. When a kid with TCS goes through puberty, they may need additional jaw reconstruction to adjust to their changing body. And so, while Wonder is just one fictional story about one kid with TCS, hopefully it'll bring some awareness to those living this disorder, in real life, every day.
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