Welcome to Anna Liberty’s Website and Blog
Anna Liberty is an adorable little girl with a very rare disease.She was born with Xeroderma Pigmentosum (or XP), a genetic disease that causes her to be extremely
sensitive to the damaging effects of ultraviolet radiation. About 1 person for every million in the US have XP. Basically, Anna can’t be in the sunlight, or she will
develop skin cancer.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 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.
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.
Follow our blog written mostly by me, Anna’s dad. You can read the latest blog posts, or better yet, begin with the story of Anna’s last sunburn….