In January of 2001, I was born with biliary atresia, a liver disease in which the bile ducts inside and outside of the liver are scarred and obstructed. My parents found out when I was 1 week old. At the age of 2 weeks, weighing in at 5 pounds, I had surgery to remove the blocked bile ducts and create another way for the bile to drain out of my liver. My parents learned that there was no cure and were completely thrown into a life with liver disease. I was sick and in and out of hospitals for the first three years of my life. After that, I stabilized and was able to live a relatively normal life. I did have to get routine bloodwork and ultrasounds, but that just became a part of who I was. My parents never made a big deal out of it, but always made sure to tell me exactly why I was having tests done routinely.
I grew up knowing I had biliary atresia. I had a few restrictions in terms of physical activity, but I played competitive flag football and basketball and did well in school. In the summer of 2016, I was having a lot of stomach pain and my mom took me to the emergency room. It was then that we discovered that I had cholangitis. I had a stent placed and had to start my sophomore year with a bile drain bag that I had to wear to school. It was during this time that I really started to become interested in my disease. My physician was exceptional in helping me to understand what was going on with my body and I really started to think that I might want to pursue medicine in college. Although I did not follow the medical route, I am currently a junior in college pursuing a degree in Finance and Accounting. My parents always made sure that I was healthy and happy. They made sure to teach me that I am not defined by my liver disease. It’s a part of me, part of my story. It does not dictate who I am, but rather it has helped me decide who I would like to become.
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