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Everyone has sun-sensitive skin. It’s the reason we tan and sunburn. It’s why freckles, age spots, and skin cancers appear. Some people are born more sun sensitive than others. People who have an extreme sensitivity to sunlight are born with a rare disease known as xeroderma (zer-o-der-ma) pigmentosum (pig-men-toe-sum). They must take extreme measures to protect their skin from ultraviolet (UV) light. Anything that emits UV light, including the sun and some lightbulbs, can damage their skin. ...

When my daughter Aimee was born, I noticed there was something different about her skin. It was very dry and sensitive, much more so than a typical baby, and eventually our pediatrician recommended we see a dermatologist. Read entire article - >

Book Review: Midnight Sun by Trish Cook (soon to be a major motion picture) The book Midnight Sun is told from the perspective of a girl named Katie who has Xeroderma Pigmentosum (XP). But, the story is greatly exaggerated. Katie says that even if the sun touches her skin, she will die. So she stays locked inside, only going out at night. Here are some parts of the book that I, as person who has XP, found amusing and disturbing. Describing XP, Katie says, “If sunlight so much as glances of...

(This is the second in an occasional series that will follow Riley McCoy through her senior year at Dana Hills High.) The new queen sparkled under the stadium lights, accepting tearful congratulations, hugs and kisses from those who took joy in her coronation. Her story seemed like a fairy tale. Riley McCoy, the girl whose rare disease forces her to spend her daylight hours indoors, floated through her first weekend as the Dana Hills High homecoming queen trying to find new places in he...

A 17-year-old girl with a rare condition that prevents her from exposing her skin during daylight hours had her night in the sun on Friday when she was crowned homecoming queen of Dana Hills High School. Read Article ->

Have you ever truly considered the sunset? Riley McCoy has. When you think about it, the sun doesn’t set at all. It doesn’t drop or recede. The sun is fixed and relentless to the point that, every evening, the earth turns away. Riley is 17, trying her best to have a typical senior year in high school. Her life is too dependent on the bend of the horizon, the reach of ultraviolet rays and the danger of the sun. Every day, Riley waits as the Earth rotates east. She gazes through tinted wi...

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