Why I Walk: My Type 1 Diabetes Story
From ICU at 108 lbs to a 4.9% HbA1c using DIY Loop. How a late diagnosis changed everything and why I'm walking for Breakthrough T1D.
In November 2023, I was admitted to the ICU weighing 108 pounds at 6 feet tall. I was diagnosed with Type 1 Diabetes, with positive GAD65 antibodies and an HbA1c over 15%. I was in severe diabetic ketoacidosis (DKA), had multiple muscle tears, and a hematoma.
It started with what felt like a cold. Then it escalated to a severe flu. I left the hospital using a walker, then graduated to a cane, and now I can walk just fine again. The muscle tears were caused by the DKA, something I didn’t even know was possible until I lived it.
The Signs Were There
For 2-3 years leading up to my diagnosis, I experienced small symptoms that were dismissed by my prior doctors. Looking back, the signs were there. But Type 1 Diabetes in adults often gets missed or misdiagnosed because people assume it only happens to children. It doesn’t.
Building My Own Solution
I’ve been building technology for 15 years. When I was hospitalized, I was already two years into building Nextvisit AI, a platform designed to help clinicians spend more time with their patients. Suddenly, I was the patient.
I spent my bedridden days doing what I do best: learning. Reading studies, books, talking with others in the T1D community, watching everything I could find. I needed to understand this disease that was now part of my life.
My technology background became my advantage. I implemented DIY Loop, an open-source automated insulin delivery system that functions essentially as a bionic pancreas. Using Omnipod and Lyumjev, I’ve achieved a 4.9% HbA1c and stable vitals. My doctors say I have a low risk of developing complications.
Thanks to amazing doctors and access to cutting-edge technology, I live a normal life with minimal thought to carb counting and exercise. Of course, there are still the downsides that come silently (or sometimes not so silently: BEEP BEEP BEEP). CGM changes, insulin pump failures, occasional lows. There are frustrating and painful times. But it’s manageable.
What Type 1 Actually Is
For people with Type 1, our pancreas doesn’t produce insulin because our immune system attacked the islet cells. No diet, exercise, supplements, or TikTok influencer can cure us. This isn’t something we caused. It’s not something we can reverse with lifestyle changes. We depend on insulin to stay alive.
People die when they can’t afford the medication they need. That’s not a hypothetical. It’s why this matters.
Why I Walk
I’ve embraced T1D and I’m hoping to use my technical abilities and position in the healthcare space to further advancement for T1D technology. Building Nextvisit taught me that healthcare technology should make lives better, not just processes faster. Living with T1D reinforced that belief from the other side of the exam room.
This year, I’m walking with Team Yannelli at the Breakthrough T1D Walk in Westchester. Breakthrough T1D (formerly JDRF) is the leading global organization funding Type 1 Diabetes research. They’ve invested billions in research that has led to breakthroughs in treatment and is working toward a cure.
Join Us
You can help by joining my team, walking with us, making a donation, or simply sharing this story. Every bit of awareness matters. Every dollar funds research that could change lives.
Thank you for reading my very much abridged biography. The full version involves a lot more beeping.