Hi, I'm Emily. I was diagnosed with diabetes at age 16 by way of a blood test at a routine doctor’s appointment. For what it's worth, I had none of the classic symptoms (e.g. frequent urination, excessive thirst, rapid weight loss).
An endocrinologist diagnosed me with MODY (Maturity Onset Diabetes of the Young) which he described as a rare and poorly understood form of diabetes that most doctors were not yet aware of. Indeed, over the next two decades a series of endocrinologists would suggest alternate diagnoses of: Type 1, Type 2, Type 1.5, and LADA.
Back then, the only person I knew with diabetes was my grandmother and that was true through high school, college, and my first few professional jobs. Diabetes made me feel different from the people around me, so I didn’t really talk about it. Instead, I managed it on my own and saved up my questions for the endocrinologist.
In 2004, newly pregnant with my first child, I joined an online community for people with diabetes and was amazed by the support I felt there. I soon discovered diabetes bloggers and a Facebook page just for people with MODY. I became connected to a growing network of people who faced similar challenges and asked similar questions.
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 the studies, I got genetic testing and - almost 30 years after my initial diagnosis - confirmed as MODY3.