port-wine stain

‘The monitor went crazy. Suddenly, there was a half dozen doctors in the room, bagging my son. ‘I’m going to watch him die, aren’t I?’: Boy diagnosed with rare Sturge-Weber Syndrome, ‘A birthmark changed our life’

“He was hitting his milestones. He was happy. He was supposed to beat the odds. One evening, we noticed he wasn’t himself. He wasn’t making eye contact and was whimpering non-stop. We thought it was the heat, so we gave him a cool bath and went to sleep. The next morning, his face turned blue before my eyes. He went limp. The ambulance came and took Noah away. I couldn’t believe it. My baby wasn’t my baby anymore. Watching him fight made me so strong. For him. For us.”

‘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.”

‘What do I need to do to make it?’ I walked through those doors, standing at 315 pounds with a disability I hid. ‘Let’s give this a shot.’: Woman with Klippel Trenaunay Syndrome finds peace in chronic illness

“I was spending every day off work as a first responder on a recliner or in bed, surrounded by pain and fatigue. My disease was here to stay, after it had been silent for 12 years. I’ve always been hard-headed. ‘I will do it on my own.’ But when my health became something I could not hide anymore, I knew it was time to share it, despite the fear of what they may judge.”

‘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.”

‘I can’t! I can’t leave the house without makeup!’ I was shocked. He looked me in the eye. ‘You can’t, or you won’t?’: Woman embraces port wine stain birthmark after years of ‘feeling ashamed, insecure’

“I waited after I had my son to start treatments. The swelling, bruising and scabbing made me feel worse than my red, bold birthmark. I was miserable stuck at home, hiding, waiting for it to heal. I asked my husband if he’d get me In-N-Out. ‘Yeah, let’s all go.’ I was in shock. Why would he think I’d leave the house with my face all bruised and swollen if I can’t even leave the house with my birthmark in its normal state?! That’s when I lost it. Tears streamed down my face.”

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