Anna has XP.
Her skin can never be exposed to direct sunlight.
We suggest you start at the beginning: The story of Anna’s last sunburn ever. Or watch our quick video below!
Daily living is a bit different for Anna. Each day, Anna’s skin is covered with sunblock and lotions. She must remain indoors to be completely safe. Before going outdoors, Anna must wear, long pants, long sleeved shirts, gloves, sunglasses, and a custom made hat with a specialty UV-blocking plastic face shield.You’ll understand better after reading these answers to the common questions.
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.