Hi, I'm Emily Moore. I was diagnosed with diabetes at age 16. I had none of the classic symptoms (frequent urination, excessive thirst, rapid weight loss). The surprise diagnosis came by way of a blood test at a routine doctor’s appointment.
I was referred to an endocrinologist who diagnosed me with MODY (Maturity Onset Diabetes of the Young). He described it as a rare and poorly understood form of diabetes that differed from Types 1 and 2 and that most doctors had not heard of. (Indeed, over the next two decades doctors - a series of endocrinologists among them - would suggest alternate diagnoses of: Type 1, Type 2, Type 1.5, or LADA.)
At the time of my diagnosis my grandmother was the only person I had ever known with diabetes. The same was true through high school, college, and my first few professional jobs. I knew almost no one with diabetes, let alone anyone my age or anyone with MODY. As a result, I didn’t really talk about diabetes. It made me feel different from the people around me, so I just managed it on my own and saved up questions for my endocrinology appointments.
In 2004, pregnant with my first child, I joined an online community for people with diabetes and was amazed by the support I felt there. Soon I discovered diabetes bloggers and a Facebook page for people with MODY. I became connected to a growing network of people who faced similar challenges, asked similar questions, and shared my concerns.
Eventually I was accepted into studies at the University of Chicago School of Medicine’s Kovler Diabetes Center and the University of Maryland School of Medicine Personalized Diabetes Medicine Program. Thanks to these studies, I got genetic testing and - almost 30 years after the initial diagnosis - confirmation of MODY 3.
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