Treacher Collins syndrome. There’s a good chance you haven’t heard of it, but if you have you’ll know how much it can affect its sufferers.
A condition that alters the development of bones and other tissues in the face, it can cause deformities and malformations in the ears, eyes, cheekbones, and chin. In short, those who suffer from it can be left with facial disfigurments, naturally making everyday life a more complicated affair than it should be.
Perhaps you’ve seen the movie ‘Wonder’, depicting the story of fifth-grader August “Auggie” Pullman, a boy born with Treacher Collins syndrome who struggles to cope with life in a private middle school.
Michael Goodman, a 37-year-old paediatrician from Indianapolis, Indiana, is a real life Auggie, in as much as he knows what it’s like to have to cope with Treacher Collins syndrome growing up. Prior to the release of “Wonder”, he opened up on Facebook about the condition, and we think it’s a read all should undertake …
Posted by Michael Goodman on Friday, December 15, 2017
The Genetics Home Reference site says that the condition affects one in 50,000 people. It’s caused by mutations in a specific gene and is incurable.
Awareness
Awareness of Treacher Collins syndrome is something that needs to be improved, which is why people like Michael are aiming to share personal experiences in the hope of enlightening others.
Michael’s post was shared by over 3,000 people, and serves to highlight the troubles people who suffer from the condition can experience.
“My name is Michael Goodman and I’m a 37 year old pediatrician. I love ice hockey, ice cream, and quite possibly Maggie on The Walking Dead.
I also have Treacher Collins Syndrome, like Auggie has in Wonder. The mutation responsible for the syndrome affects development of the external ears, middle ear bones, cheek bones, and lower jaw. I have experienced 75% of the social struggles Auggie dealt with, plus attempted suicide twice my senior year of high school in addition to a family not allowing me to take care of their child as a physician due to my appearance and my speech.
Words can and do hurt.
People with facial deformities want to be treated like any other normally developed person: respected, even loved
This is why Wonder needs to be read, spread, and shared. In her book, R.J. Palacio has done an amazingly powerful job of describing what it’s like to be a kid with a facial difference.
Please read the book and educate yourselves, your children, and #ChooseKind. And see the movie.”
https://www.facebook.com/michael.goodman.756/posts/10214565554590184
What a brave man Michael Goodman truly is, and what a fantastic inspiration he is for anyone else living with a facial deformity.
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