Hi, I’m Emily. I was diagnosed with diabetes in 1986 at age 16. I had none of the classic symptoms – no frequent urination, no excessive thirst, no 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 did more testing and concluded that I had 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 went on to explain that most doctors hadn’t heard of it. (Indeed, over the next two decades of endocrinology appointments, doctors would suggest that I might instead have: 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 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.
It wasn’t until 2004 that I joined an online community for people with diabetes and was amazed by the support I felt there. Soon I discovered diabetes bloggers a Facebook page for people with MODY. I was connected to a growing network of people who faced similar challenges, asked the same questions, and shared my concerns.
I was accepted into studies at the University of Chicago 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 an actual, for-real diagnosis in 2016.
So, almost 30 years after my initial diagnosis, genetic testing confirmed that I have MODY 3. I am hopeful that others will now have an easier path!
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