Personal Narrative: My Rare Craniofacial Syndrome

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I was born with a rare craniofacial syndrome and have had multiple surgeries to correct my skull. Living with this is difficult especially if you have no one to share the same experiences. Luckily, I have friends nearby that have similar syndromes and scars. I know the importance of supporting one another, so we don’t’ feel alone. I met Hannah while attending a craniofacial retreat. She lives in North Dakota and retreats were the only time Hannah saw others, like herself. April 2015, Hannah needed a date to go to her prom and I decided to take her. At this time, Hannah was self-conscious about her looks due to a recent surgery. She was always wearing a hat to cover her scar and would not have her picture taken. I show my scar like a Badge