Living with MODY3 – Part 1 by Nadia Milojevic

Over the last few years, we are hearing more about various types of diabetes apart from the usual type 1, type 2 and gestational diabetes. In our two part global postcard, Nadia shares her MODY 3 diagnosis story. What is MODY 3? Check this link out to find out more. For part 2 of the story, click here.

Part 1 – Diagnosis

Diabetes has always been a part of my life. Growing up, both my father and my uncle had the condition. Not to mention that my grandfather and his 7 brothers were all “blessed” with diabetes. So, I guess I always knew from a young age that eventually I would become a diabetic. 

Sure enough at the age of 16 I was diagnosed with type one diabetes just like my dad. My initial symptoms were not typical though. I wasn’t tired, nor did I experience weight loss or extreme thirst. I did get a rather strange numbness in my feet, which prompted me to get my glucose levels checked. Especially as diabetes was very strong in my family history. This was where it all began.

My first experience of injecting myself with insulin came so naturally to me. Not only did I have to inject myself daily, I was only 16 and had to completely change my life around. I can still remember how amazed the nurses were at just how calm and composed I was. 

In comparison to others with diabetes, I had the advantage of being very well prepared and knowledgeable about the condition from my upbringing. I knew what I had to do, and was determined to take on all of what I had learnt from watching my dad. My objective was to be the most healthy diabetic possible. I saw it as a challenge more than a disadvantage or a means to feel depressed about it. Unless I accepted it and did what I could to be strong, I wasn’t going to be helping my body.

After about two months of using insulin, I started having problems managing my glucose levels. It seemed like the insulin just wasn’t working for me. I started having many problems sleeping, eating, and I was always afraid to exercise as it would lower my glucose levels. My glucose levels were all over the place and nothing seemed to be working.

So after weeks of struggle my amazing doctor suggested that maybe I wasn’t in fact a type one diabetic like my dad, but actually a MODY3 (maturity onset diabetes of the young) diabetic like my uncle. As genetic testing was really expensive at the time, my doctor and I decided to go with her gut instinct instead. Under the guidance of my doctor and other diabetes specialists, I was hospitalised for a week to transition from insulin to my current tablet, gliclazide, which was what my uncle was taking at the time. 

Within the first few days of the transition, my levels began to stabilize both during the day and throughout the night. Finally, I was able to start sleeping a little better and eat more normal quantities of food as I was no longer experiencing those horrible hypos. My doctor’s intuition was right, and it was from that moment that I was then officially diagnosed with MODY 3 even without the genetic test.