Saethre-Chotzen Syndrome

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5y

Saethre-chotzen syndrome

I have serious concerns about my life. This facial disability caused mild deformities, but still people will often stare at me. I have never been on a date with a girl before and will most likely die a virgin. I keep wondering if people with similar conditions as mine ever lead normal lives. I wonder if plastic surgery will help the face appear a bit more normal. Any stories will greatly help
saethre-chotzen syndrome

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SaethrechotzenSyndrome 5y

Hello everyone, I would really appreciate answers. So I am a 20 year old make with a craniofacial disability. Do these people ever live normal lives?

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Story

Aimee Dickerson

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Uncategorized Disorders

8y

When You and Your Child Live in the Shadow of Her Next Doctor’s Appointment

I was talking to my husband about how I feel like we walk around with the looming threat of surgery over us all the time. At any appointment we have for our daughter, it seems there is always the possibility of some surgery. Eye surgery, ear tubes, tonsillectomy and adenoidectomy, frontal orbital advancement and posterior [...]

Story

To My Past Self — Here's What You Didn't Know on the Day of Your Son's Diagnosis

To My Past Self — Here's What You Didn't Know on the Day of Your Son's Diagnosis

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8y

To My Past Self — Here's What You Didn't Know on the Day of Your Son's Diagnosis

Today, the doctors will tell you that your baby boy is missing part of his DNA, and they do not know exactly how this will affect him. I know you want to meet the news with dignity and grace, because this is not a diagnosis. This is your son, and you enthusiastically accept every part of him. As you [...]

Story

When People Ask, ‘Why Does His Face Look Weird?’

When People Ask, ‘Why Does His Face Look Weird?’

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Saethre-Chotzen Syndrome

8y

When People Ask, ‘Why Does His Face Look Weird?’

“Why does his face look weird?” She said it with a look as if she were trying to solve a puzzle — all frowns and confusion. This look and similar questions are something we encounter every week, predominantly from children, although an occasional adult asks, too. Some are direct, while others stumble over a few [...]