Hello! As most of my friends and family are well aware, I was diagnosed with Wilson’s Disease in November 1997, when I was 17 years old and a senior in high school. At that time, I was in acute liver failure, suffering horrible pain and fatigue, and in desperate need of a liver transplant. Due to the rareness of WD, it took several months to get a diagnosis, during which time my health rapidly declined. After innumerable tests attempting to determine the cause of my condition, my mother asked my hepatologist if we could test for Kaiser-Fleischer rings (copper rings in the eye, which are a characteristic of WD), and 5 minutes later, I was sitting in the opthamologist’s office with a diagnosis!
WD is a genetic abnormality that, in my case, does not allow my body to excrete copper from the foods that I eat, resulting in accumulation of a toxic level in my liver. I have had EXCELLENT medical care over the past 18 years, and I have been on strong chelators that have successfully sucked all the excess copper from my liver (and now, with daily medical compliance, I can keep my copper levels nice and low). My road to health was pretty rocky for a few years, with hospitalizations and other secondary issues cropping up due to my cirrhosis, but I am healthy now! I don’t believe that in 1997 anyone would have believed that I would live long enough to get married (8 years now to my awesome Bobby!) or have children (Boom! Two of them, ages 6 and 5!), but by the grace of God, I am alive and thriving.
Neither of my parents, my brother, nor my children have tested positive for WD, which makes me the first, and currently, only, person in my family with the disease, Praise God. I feel absolutely compelled to walk in the Big Wow 2016 in order to raise awareness for, and fund additional research for, this extremely rare, often fatal or extraordinarily debilitating, disease. If you watch the WOW video, you will see immediately that I am one of the lucky ones. Please walk with me to support continued research. Thank you!