Hello, my name is Julie, and I am currently a senior at the University of Pittsburgh! Admittedly, receiving the initial diagnosis of Congenital Hyperinsulinism (HI) impacted my parents more than me; however, the notion of being a “mystery child” has always been something I’ve wrestled with.
Growing up, I knew that I was “different”. Other children could eat icing on a birthday cake and swim in the lake at camp without checking their blood sugar; however, those difficulties in and of themselves did not bother me. Instead, it was the isolation I felt when other kids asked questions about these differences – questions I could not answer – that weighed on me the most. I knew my condition was the opposite of diabetes and showed signs of low blood sugar, but I did not understand what it truly meant or why I had it. Despite extensive genetic testing, the type of HI I have is unknown.
My blood sugars were controlled with Diazoxide, and at the age of 14, I outgrew my medication. I distinctly remember the fear and uncertainty I felt when my Endocrinologist suggested I cease taking it. I definitely looked at him like he was crazy; however, my family and I trusted his instinct, and I’ve never looked back. Despite outgrowing my medicine years ago, the condition still has a profound impact on me.
As I’ve gotten older, my desire for community and curiosity about my condition have increased. In high school, Congenital Hyperinsulinism International connected me with Lena, another girl my age who experienced HI. Despite living across the country, we have become lifelong friends and have been lucky enough to meet many times.
Having a friend like her in my life who understands the effects of HI has helped reduce the psychological burden of being a mystery. As I get older, I am beginning to discover new ways my history of hyperinsulinism impacts me. I have a strong desire to understand the genetic root of my specific condition and the implications that may have for my future. Therefore, I am planning to return to CHOP to undergo further testing and see if new research could provide me with answers to questions I have been wondering for 21 years.
