User:Aunt Amanda
From Wikipedia, the free encyclopedia
My niece has biliary atresia (BA), a chronic liver disease. The cause of this rare disease is unknown. There is no handbook on BA, no "what to expect" guide, no "Biliary Atresia 101." For many families this is extremely uncharted territory.
Over the past three years, I've become a sort of "BA nerd." I compulsively read new medical journal articles on BA as they come out (from PubMed and amedeo.com) and most recently, I helped to start a pediatric liver disease support group called Liver Families, at liverfamilies.net. I also have a blog, called "Imagine Bright Futures," at biliaryatresia.blogspot.com. I correspond with families around the world who are dealing with the disease, and, as a result, have gained a sense of the questions that families ask and what the primary issues are.
Because the medical literature is fairly inaccesible for many families who are new to BA, and the learning curve is so steep, I am hoping that my contributions to this Wikipedia subject will help provide a map to the BA literature and other resources.
As a general rule, I am interested in articles published since 2000 and not in medical studies on mice.
