‘Stranger Things’ Sheds Light on a Rare Disorder

What does all that online interest mean in the real world?

Potentially, a lot, according to Erica Mossholder, executive director of the nonprofit Children’s Craniofacial Association.

When the public learns about rare craniofacial conditions, that can make a difference in the daily lives of people with them, she noted.

“One of our parents coined the term, ‘More sharing leads to less staring,'” Mossholder said.

CCD is quite rare, but some other craniofacial disorders are more common. Among them are cleft lip and cleft palate, which affect one to two out of every 1,000 babies born in the United States, according to the March of Dimes.

Yet historically, Mossholder noted, movies, shows and books have often used facial malformations as a way to mark the “villain” in the story.

In “Stranger Things,” Dustin is merely a kid who happens to have CCD — portrayed by an actor who happens to have it.

For kids with any craniofacial difference, Mossholder said, it can be “incredibly hope-giving and empowering” to see that.

Dr. Christian Vercler is a plastic surgeon with the Craniofacial Anomalies Program at the University of Michigan’s C.S. Mott Children’s Hospital.

Vercler said he hopes the series “makes people realize that CCD is a condition that makes kids a little different, and that’s OK.”

According to Vercler, some kids with CCD need surgery to realign the jaw or correct severe scoliosis. But every individual is different, and those surgeries would be done when a child is older and involved in the decision, he said.

It would be interesting, Vercler said, to know whether the rise in CCD-related internet searches has led to any bump in donations to foundations dedicated to craniofacial disorders.

The study looked only at online traffic. But, in general, Johnson noted, increased public attention to a health issue can lead to more donations and research investment. (Matarazzo did help launch the foundation CCD Smiles, to provide dental care assistance and support research.)

For a kid with a rare condition, he said, the importance of such positive media portrayals can be “huge.”


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