“My parents were told, ‘Only major reconstructive surgery will correct the anomalies.’ Because I spent most of my childhood in hospitals, I was playing catch up. My lack of confidence took its toll on me.”
‘Some days are harder than others.’ I get eyes darting at me as I’m walking down the street. It isn’t easy.’: Man with facial differences becomes motivational speaker, ‘It was worth all the pain’
‘Hey look, it’s Two-Face!’ I’d come to school with purple burn dots. I felt like I was going through the pain for others.’: Woman with Sturge Weber Syndrome becomes advocate, ‘We aren’t scary monsters or villains’
“I was held down, screaming for them to stop. With each snap, a dot was burned onto the skin to break up the blood vessels of the birthmark. It was then I walked away from the world of wanting to look like everyone else.”
‘I told myself, ‘It won’t last forever.’ I was self-conscious about my looks. It was holding me back.’: Woman with Treacher Collins Syndrome says ‘I choose to feel nothing but empowered’
“I decided, ‘I’m going to shave my head.’ I used my long hair as a shield, but once I didn’t have it anymore, I was forced to be seen. All of my differences were out in the open. I had no choice but to embrace what made me different.”
‘I’m not model material.’ I was skeptical. I’ve NEVER seen a supermodel that looks like me.’: Woman with facial abnormality walks in fashion show, ‘Representation matters’
“Not a single girl looked like anyone else. There were girls of all shapes, sizes, races, and abilities. I threw my shoulders back and walked the runway with my head held high.”
‘I can’t understand you!’ I wrote it down on my hand. He started speaking slowly, as if I was less intelligent.’: Woman with facial anomaly hopes to ‘normalize all bodies’
“It’s exhausting trying to pump gas or sit in my kids’ karate class and be stared at constantly. When people see my face, they assume my intelligence.”
‘I overheard nurses murmuring about a ‘bruise.’ Then I heard, ‘I don’t think that will fade.’ The left side of her face was a deep red.’: Mom vows to raise baby with Port Wine Stain as ‘the most confident girl to ever walk the planet’
“We weren’t trying to get pregnant. They lifted me off the toilet after I nearly passed out. My vision dotted with stars, I remember saying, ‘I don’t care if it’s permanent. I love her just the way she is.’ Everywhere we go, strangers ask, ‘WHAT happened?’ We can’t go to the store without getting stared at.”
‘My cheek was swollen. The doctor said, ‘I’ve never seen anything like this before. Your life expectancy is 6 years old.’: Woman gets Facial Infiltrating Lipomatosis diagnosis after 22-year battle
“We were told, ‘The swelling must be from the position she slept in. It’s nothing. It will go away soon.’ Weeks went by, but nothing changed. When puberty hit, my face was growing faster than I was. I had unexplainable headaches and nosebleeds. I was sleeping all day long. Everywhere I went, I got stares, whispers, and pointing fingers.”
‘They put him on my chest for the first time. The doctors did a double take and immediately took him back. ‘Treacher Collins? WHAT?’: Little boy with Treacher Collins Syndrome spreads kindness and acceptance
“FINALLY! I was induced, and FOUR days later, PJ came out! His dad and I cried tears of joy. Then the doctors did a double take and took him away. I thought he was the most beautiful boy, but I feared how he would be treated by other kids. He will always look this way.”
‘What’s wrong with her? Can it be fixed?!’ I had wide-set eyes, webbed fingers. People can’t help but stare.’: Woman meets child with similar Craniofacial differences, ‘I hit the jackpot and found belonging’
“I’m a closet Web MD researcher. I typed in all the things I was born with and a term popped up. Low and behold, there were kids all around the world that looked like me! I’ve always made up wild exaggerations as to why I was born this way. Now, I need no answer. For the first time in my life, I can say, ‘Me too.'”
‘Excuse me, my child has a question about your face.’ Others pulled their kids away like I shouldn’t be looked at.’: Woman with Craniofacial differences reminds us to use ‘kindness’ to approach uniqueness
“In middle school, kids started to stare and ask, ‘Why does your face look smooshed? What’s wrong with your nose?’ My mom would tell me how pretty I was and I’d always say, ‘You’re my mom, you have to say that.’ I’d spend so much time buying cuter clothes, different makeup, more jewelry to overshadow my face. But when I stripped it all down, my confidence was gone.”
