My name is Paul, I am currently 24 years old and live in Maryland. I was born with Port Wine Stain on 75 percent of my face, body, and inner organs, as well as glaucoma in both eyes, and bi-lateral Sturge-Weber of the brain including the affects of epilepsy. I also have KT of the right hand and arm.
I've had 15 laser treatments for my PWS since the age of 10, and a lower lip "debulking" when I was a junior in high school. I've had 7 eye surgeries for my glaucoma.
Currently I'm on 2000mg of Carbatrol to control my seizures. but still have the occasional breakthrough every so often.
Childhood wasnt much of a picnic for me. I never really embraced my conditions so I never knew how to handle myself with people, they knew nothing about my rare condition and I didn't know how to explain it, I always just tried to ignore that I was different. All through middle school I got beat up everyday, it wasnt a complete day without at least one beating, and one trip to the nurse's office. I was so frightened I ate lunch there too. Sad when your only friend is a teacher or school nurse.
During High School that all stopped, but it went from negative attention to none at all, I was ignored, or just looked at like I was a freak. I still had no way to explain what I had, always changed the subject or kept to myself. Girls were disgusted with me, and that is still an issue I struggle with today because I'm not your good looking bad boy type at all LOL. Granted I'm not horrific looking but as we all learn eventually most peoples views when it comes to looks are very tainted and shallow.
Finally, during senior year something in me snapped! I couldn't take it and had to discover the part of myself I had been shying away from. I went wherever I could to learn more about my condition even though I had a pretty good idea to start with. But it wasn't till I met someone like me that changed me, I sought out more and more people and when I finally found myself in a room with over 50 people like me, it was like a warm embrace I felt from the inside.
I'm now a changed man and live life differently. I love who I am and everywhere I go I'm always educating about PWS, SWS, and KT. It's part of my daily life to educate and I'm never bothered by questions because I know I'm not alone anymore. Life has a different way of looking when you know your not the only one of your kind in existance. We all may have a common thread among us, but that only further defines how different and special each of us truly are, and can become because of it. If not for my condition I don't think I'd be as complete as I feel, not as strong emotionally, and not as wise and intelligent as I am. I owe it all to my birthmark for being what made me the person that I am
Long time no here. It has been a long.
Thank you for sharing your story. I am sure others will enjoy reading it.
I am looking forward to catching up with you.
Talk to you later.
lucky my English name is paul too.i think it is a good name.
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