Today I went to Disneyland for a few hours with my family. I had the most fun hanging out with Peter Pan in Fantasyland. He says he should be everyone’s favorite character and I fully agree with this. I thought people might like to know what it’s like to go outside when you have XP/TTD since with this disease, your cells can be damaged by UV light (like from the sun). The damage doesn’t get repaired, and that can make you get sicker over time.
I have to start the day putting on a lot of sunscreen over all my skin. My sunscreen has zinc in it, which is an element that can block UV rays. Then, I cover as much of my body as I can with clothes. So, today I wore leggings, a dress, and a denim long-sleeved jacket. It got hot today, but I couldn’t take off the jacket. I also have sun-blocking gloves. My glasses have UV-protection lenses. I don’t like putting sunscreen on my head because it makes my hair sticky, so I usually wear a hat to protect my scalp. People with some types of XP wear a face-covering hood as well.
If I’m outside, I have to put sunscreen to any uncovered skin every 2 hours, or if I get wet. That may seem like a long time, but it is annoying to stop when you’re having fun. Sometimes people will ask me, “Can’t you just stand in the shade?” Even in the shade or on a cloudy day, you’re still being exposed to a LOT of UV rays. I have a monitor to help me keep track of how much UV is in my environment.
I always love going to Disneyland, but being safe in the sun is important, too, and it’s something I always have to think about!