I had a great Christmas. One of my favorite gifts was a Positive Exposure sweatshirt. My mom had my name put on it, and I think it looks cool. When people ask me about Positive Exposure I tell them it’s about showing everyone that people with disabilities have lives, too!
There’s a new movie coming out called Midnight Sun. It’s about a girl who can’t go outside in the daylight, and one night she meets a guy who she has seen through her window. She starts to go out with him at night, but doesn’t tell him about her disease. When I saw the trailer in the theater, I thought, ”That’s not what it’s like! Not all XP is like that!” People with XP and TTD are sensitive to the sun, and UV rays are dangerous. But that doesn’t mean we can’t go outside, have a life, and have real friends.
The girl in the movie doesn’t want to tell anyone she has XP because she doesn’t want to be seen as just a disease. I understand that feeling a little, but not fully. I go through some things related to my disease every day, but I also just live my life and have fun. When I’m ready, I tell my friends about XP/TTD. I don’t really think of my self as just a disease. It’s part me, but it’s not the most important part of me.