Anna was born with Xeroderma Pigmentosum (or XP). XP is a rare genetic disease that causes her to be extremely sensitive to the damaging effects of ultraviolet radiation. Anna’s variation is XP-D.
Some mistakenly think she’s allergic to the sun, but it’s more severe then that. Daily living is a bit different for Anna and her parents. Each day, Anna’s skin is covered with sunblock and lotions. She must remain indoors to be completely safe. Before going outdoors on occasion, Anna must wear shoes, long pants, long sleeved shirts, gloves, sunglasses, and a custom made hat with a specialty UV-blocking plastic face shield.
Each window of our home and car has been treated with a UV-blocking film, thanks to the generosity of 3M, Glamour Glaze, and the XP Family Support Group. UV blocking plastic sheets are used to cover her stroller and windows at places such as Church and other family members’ homes.
Because Anna was diagnosed early, if she continues to not show neurological symptoms, and takes all the precautionary measures to avoid exposure to UV light, she will defy the odds and live a long, happy life.
We begin our blog with the story of Anna’s last sunburn….