Diagnosed at 19 at 470 mg/dL: twelve years of T1D from Georgia

Hi everyone, I’m Irakli. I’m 31, from Georgia (the country, not the US state), and I read my numbers in mg/dL, so apologies in advance to the mmol/L crowd.

Some background before the diabetes part. I’ve been in technology since I was a kid: I was building websites at 14 or 15, earning my own money as a teenager and helping my family with it. By 18 or 19 my other obsession was the gym. I trained hard and bought every sports supplement a teenager with his own income can buy: gainers, protein, all of it. Some doctors at the time wondered out loud whether any of that was connected. I never believed it myself, but I’ll admit the timing was strange: the summer I finally took a break from training was exactly the summer everything started.

Summer 2014. Thirst I could not switch off, bathroom trips around the clock. I knew absolutely nothing about diabetes. I was out of town, so I called my mother and listed the symptoms. She works in a medical laboratory and she didn’t hesitate: come back, we’re checking your blood sugar. I went straight from the trip to her lab. The meter read 470. I genuinely did not know whether that number was good or bad. Then my mother started crying, and that’s how I found out. I learned my diagnosis from her face before any doctor said a word, and I’ve never forgotten that moment.

I was admitted to hospital and started insulin. Pens from day one, Apidra and Lantus, and funnily enough that is still my exact setup twelve years later. No pump so far; MDI has worked for me.

The first years were the hardest part of the whole story. Fingersticks beyond counting, checking almost every hour, weighing food in grams, afraid of eating, afraid of the future. The timing felt especially cruel: it hit exactly at the age when I thought my life was about to begin, and instead I decided it was over. There was real depression, dark thoughts, and tears. If you were diagnosed as a young adult, you probably know that feeling without me explaining it.

But I got back up, mostly by studying the condition the way I would study any hard technical problem. Around 2016, after a year or two of shredded fingertips, I found out that the FreeStyle Libre had just come out. Nobody told me about it and no doctor here recommended it; most doctors in my country did not know it existed, and many still don’t. I researched it myself, ordered it myself, and I’ve been wearing a CGM ever since. For all I know I was one of the first people in Georgia walking around with a sensor on my arm, possibly the first, and honestly it would not surprise me. It split my life into before and after: seeing a curve instead of isolated dots changed how I understood my own body, what food does, what stress does, what a night actually looks like. That is also roughly when I properly got back on my feet.

One thing worth knowing about my corner of the world: for adults in Georgia there is still no insurance or state program that covers sensors, so since Libre 1 I have paid for every sensor out of my own pocket, ordering them from Germany. Twelve years of that adds up, and I would do it again without thinking. To be fair, things are slowly improving: today the state gives children under 18 free Libre 2 or Medtronic Guardian sensors, which would have sounded like science fiction back in 2014.

I’ve worn every Libre generation since. My daily sensor today is the Libre 3 Plus, with a Dexcom G7 in rotation from time to time, so I know both ecosystems first hand.

Now the plot twist. My profession has always been technology and marketing, and when you wear CGMs every day for this many years, you start noticing not only what the tech gives you but also where it leaves gaps. The biggest one for me was nights. There were nights when I simply did not wake up to an alarm, and anyone who has slept through a low knows that specific morning feeling. Once I became a father, that stopped being acceptable: I wanted more than one thing that could wake me, and I didn’t want to be the only person who could see my numbers at night.

And it wasn’t only nights. It has always surprised me how slowly the official apps pick up things that have been normal in tech for years. My glucose lived inside one app on one phone, while my actual life happens in more places than that: at a desk during work hours, at the gym, in the living room in the evening, next to my family. I kept collecting these “why doesn’t this exist yet” moments, and eventually they won. That is how I ended up building a diabetes app with a small team. It’s called Sugar Sense and I’m the founder. I built it first of all for myself, to cross those moments off one by one; today around 5000 people worldwide use it, which I still find a little surreal.

Where things stand now: I’m 31 and a father of three. None of my kids have diabetes, and I pray it stays that way. Five years after my diagnosis my father developed type 2, so glucose is a family topic at our table either way. My A1C stays in the normal range and my time in range sits around 85 to 90 percent, which 19-year-old me would flatly refuse to believe. Boring consistency did more for me than any single heroic change.

If I could talk to that 19 year old on diagnosis day, I would tell him this: it is not a verdict. It is a companion, an annoying one, but you can live a full life next to it. Work, the gym, family, all of it. I would spare him the dark period and the tears at the start if I could.

That’s my story so far. Glad to be here, and looking forward to reading yours: this category is exactly what I wish had existed for me in 2014.

3 Likes

@Irakli Welcome to FuD it’s a great community. Your story will resonate with most T1s here. You are really doing well.

I’d be interested in an app created by someone in the game. I’ve used several and find most lacking.

I am a hardware electronics person and have an irrational dislike of coding. Maybe because that was my mother’s thing.

Good luck to you, and I’m glad you survived being 19.

1 Like

Thank you @CarlosLuis, that is a very warm welcome. And thanks for the laugh, some days I am also surprised I survived being 19.

The hardware and coding split made me smile, because in my family it went the other way around: my mother is the lab person and I ended up the software person. Huge respect for hardware people though. My whole story only exists because someone soldered a tiny miracle that sits on my arm.

And I hear you on most apps feeling lacking. Wearing the sensor every single day while building is a very different kind of quality control: every annoyance is personal. If you ever give mine a try, I would genuinely value your feedback, hardware eyes catch things software eyes miss.

1 Like

Me too, it wasn’t diabetes; I was diagnosed with T2 at 40. When I was 19-20 I was an emotional wreck. I got suspended academically from university. It took the US Air Force boot camp and avionics technical school to sort me out.

2 Likes

That is quite a turnaround story of its own. Sounds like we both got sorted out the hard way: yours came with a drill instructor, mine came with a lab meter. Funny how the thing that feels like the end of the world at that age can end up being the thing that organizes the rest of your life.

And avionics is no joke. Working on systems that absolutely cannot fail probably explains why most apps feel lacking to you. Glad the 19 year old versions of both of us made it here.