PWS

‘It was pizza day in school. ‘Your face looks like a pepperoni.’ My friend got up and slapped the guy.’: Woman born with port wine stain learns to embrace her beauty, ‘I needed to be myself’

“I was born with a big Port Wine Stain, covering half of my face. They would only laser a small part of my birthmark at a time because it was so painful. My mom recalls ‘the smell of burned skin getting in her nose.’ As I got older, I felt people staring more. Adults would stop in the middle of the sidewalk. ‘Wow.’ Kids would point. ‘Look at that.’ Imagine a little girl asking a grown woman, ‘Can I help you?’ That was me growing up.”

‘My fingertips gripped the vinyl. It felt like ‘hot rubber band snaps.’ My mom had to hold me down. For a child who doesn’t understand, it’s torture.’: Woman with port wine stain advocates for ‘torture’ pain control, ‘It felt like hot needles into my brain.’

“As we walked toward the doctor’s office, the fear made my body cold. I would feel my anxiety bubbling up, making it harder to breathe. I wanted to pull away from my mom. Stop getting closer. I became aware infants and children are still treated without any pain control. ‘They just swaddle them and do the treatment really fast,’ I was told. Babies? How could anyone do this? ‘It doesn’t really hurt.’ Reading this made me want to vomit. The memories of the pain and being held down is so visceral for me.”

‘After my C-section, I heard, ‘Wow! He’s got a big birthmark on his face.’: Baby is born with Port-Wine Stain and Sturge-Weber Syndrome, ‘Never did I think I would have to consider what anti-seizure medication would best keep my child thriving.’

“A bright reddish-purple color covered more than half of my newborn son’s face. ‘Will this birthmark fade? Will it get worse? What will other people think? Can this lead to other health issues?’ Looking back now, those first months of Leo’s life, I was living in fear. I was consumed by anxiety, exhaustion, and confusion.”

‘Were you in a fire?’ ‘Did someone beat you?’ ‘No one will ever want to date you!’ It was cruel adults asking, not curious children.’: Woman born with Port Wine Stain views it as a ‘blessing’ to filter out ‘shallow, undeserving people’ from her life

“When I met my husband, he was unlike any other guy. He looked past my exterior and into my soul. He truly wanted to get to know me. He was attracted to my confidence despite of looking different. ‘I never see your birthmark,’ he always says. He never made me feel insecure like so many guys in the past. So many broke my heart, used me, kept me a secret, disrespected and took advantage of me. He never made me feel like I had to change who I was.”

‘Are you sure it’s just a birthmark? Is it contagious? That’s gross.’ I was nicknamed ‘Two-Face.’: Man with Port-Wine Stain overcomes harsh bullying, urges ‘it’s helped me change lives’

“As a child, we moved a lot. There were always rude comments. ‘What is that red thing on your face?’ Because of my birthmark, I never had a girlfriend in high school, never went to the prom. When my dad asked me if I wanted to get treatments, I refused. ‘The only thing worse than a giant birthmark on my face would be a giant swollen, burnt and scabbed birthmark on my face.’ I had no idea it could get progressively worse.”

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