For Patients Caregiver Tips and Advice For Medical Professionals

Megan D.

Megan D.

Wilson Disease

Growing up in a small town didn’t allow for many people to experience change. However, my seventh grade year I experienced a huge change. I was experiencing complications and attending Riley Hospital for Children, to soon discover after a year of tests that I was diagnosed with Wilson’s disease.

At such a young age, being diagnosed with a chronic disease was difficult to accept for both myself, as well as my family. Most people don’t realize that health complications and drastic changes in one’s life don’t only affect yourself, but they
affect your loved ones also. Because the physician diagnosed me at such a young age with Wilson’s, I hadn’t experienced any symptoms thus far. This made it very difficult for me to understand why I had to take medications, and was therefore not consistent taking them. As I grew up, I started to grasp the concern as to why my medications were so important. I couldn’t change the fact that I was diagnosed with this disease, so I put my effort into something I could control.

I loved learning and eventually had the goal to understand more about my health
complications. With this effort came an accomplishment of a lifetime. I became valedictorian of my graduating class, and planned to attend Indiana University in Bloomington. Many changes were ahead of me: I had to go to an adult doctor now,as well as prepare to live on my own. All changes I was very content on making. My first two years at IU were incredible, as I was a pre-optometry student majoring in Nutrition Science who also joined a sorority and got extremely involved in Indiana University Dance Marathon (IUDM). IUDM is a student-run philanthropic organization whose proceeds benefit Riley Hospital for Children. With previously being a Riley kid, this opportunity was amazing to me, because I got to help a hospital so dear to my heart. Life seemed to be going perfectly.

However, it wasn’t until my junior year that I was faced a huge change again that was unexpected, and it appeared as if history was trying to repeat itself once again. Luckily, my physician at the time, Dr. Vuppalanchi, kept a close watch on me and discovered something very concerning. My platelets were abnormally high, which was the correlation to my constant headaches for almost four years. I had seen many physicians on this issue, and none could say what was wrongin correlation with my headaches. I was later diagnosed my junior year with my second chronic disease referred to as Essential Thrombocytosis, which in other words means a high platelet count. Both diseases I now had were extremely rare, and this change hit me very hard. I was having difficulty understanding why. My medications were not cheap. Medical bills started piling up because I was not the only one in my family with medical issues. Yet, I tried to remember that sometimes we can’t change things, but there are things we can change. I decided to change my attitude and think positively about it all. If I weren’t lucky to be diagnosed with a liver disease, I would have never found my second chronic disease for many more years and would have had to deal with these headaches and neck/back pains. I would have never met my physicians who changed my perspective on medicine and led me to know that I would want to pursue a career where I could help people daily in their obstacles.

With this outlook on life, I persisted through college and never let these changes stand in my way. I got a job to help pay for my medications and help my family out. I graduated from Indiana University with highest distinction and a bachelor degree in nutrition science. Currently, I am taking a year off before optometry school. My journey was never easy growing up. I had to grow up rather quickly and learn how to take care of myself; however, I wouldn’t change it for anything. My liver disease has allowed me take other chances and find my passion in school, as well as learn more on what was happening physiologically in my body. Being honored as a LIVEr Champion means so much to me because it would show that I never gave up on my dreams. I persisted and fought back no matter how difficult these diseases may have made my life both physically and mentally.


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