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<p>For many people, appearance or comfort is the most important consideration when choosing a hat to wear. But for people living with Xeroderma Pigmentosum (XP), an inherited disease that causes an individual to be extremely sensitive to ultraviolet radiation, health and safety must take precedence. As part of her ongoing efforts to raise awareness and [&hellip;]</p>

Dear Patients and Family members Thank you for your participation in our research at the National Institutes of Health on the DNA repair conditions xeroderma pigmentosum, trichothiodystrophy and Cockayne syndrome. During these difficult times we would like to provide you with some information to help you and your families stay healthy.

Meet Jax, a bubbly little boy with a big, bright smile that can light up any room. Some might believe that having XP would slow Jax down, but that’s not the case at all.

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).

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.

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.