Pancreas in the Game — Ed's story

My daughter Leah is my inspiration. Her diagnosis with type 1 diabetes led me to my current role as Tidepool’s Data Science Lead. My work includes analyses to support Tidepool Loop’s FDA submission, algorithm and simulation development, and the methods behind the data cleaning and qualification of Tidepool’s Big Data Donation Project datasets. The basic idea is that if we can provide high-quality data and insights to research and industry, we can speed up innovation that the entire diabetes community can benefit from.

I’ll never forget that day. It was the spring of 2009, and I was on an escalator descending into the depths of the Washington DC metro after surviving my first in-progress review for a project I’d recently taken over from my newly-retired boss/mentor. Our team was developing a real-time noise monitoring feedback system for the Department of Defense, which (ironically) has many of the same components and complexities as closed-loop automated insulin delivery systems.

I nailed the presentation, answered the tough questions, and the review board approved me to take over a large, million-dollar project that included a research team of over 25 people. This was my first big break as an early career researcher and I was on cloud-nine.

I had proven to myself, my colleagues, and the review board, that I could lead cutting-edge research. It was the pinnacle moment of my research career at the time, and then the phone rang — it was my wife, Kelly. I was super excited to share my good news with her, but when I answered the phone it was clear she wasn’t calling to see how my review went. In the passing of a few seconds, I fell into one of the lowest moments of my life as I heard the words, “The doctor thinks Leah has type 1 diabetes.”

The situation worsened from there as the doctor — who had limited experience with type 1 diabetes — sent my wife and daughter home with the recommendation that we follow up with an endocrinologist later that week. We obviously didn’t know what we know now, but the right advice should have been, “Take your daughter to the nearest ER immediately!”

Fortunately (or unfortunately, depending on how you want to look at it), we have extended family members with type 1 diabetes and were able to get some good advice, and ended up getting Leah into the care of some phenomenal endocrinologists at Lurie’s Children’s Hospital in Chicago.

It was frustrating that the doctor that diagnosed Leah hadn’t been more knowledgeable, but we feel fortunate given that we’ve heard way too many similar stories of misdiagnosis that did not end so well.

There is another distinct moment in my diabetes story, which happened two years after my daughter’s diagnosis. I don’t know if I was too tired — from all the alarms and checking blood glucose levels in the middle of the night — or just delusional to not have reached this moment sooner, but I distinctly remember being out on a run and listening to a song that reminded me of Leah. At that moment, it finally hit me: My daughter has an incurable condition. I turned my run into a sprint, and all the emotions I had been suppressing for the last two years came flooding out of me as I ran faster and faster, until I couldn’t run any faster…and then I stopped...and then I cried...for a long time.

Obviously this moment in time had a lasting impact on my life and is the primary reason I am currently a data scientist at Tidepool. When I’m having a bad day, I think about my brave five-year-old, smiling in her hospital gown after she finally started feeling better, and I’m reminded of all the important work that needs to be done. I am not sure of your connection to diabetes, but I can tell you that as a parent of someone who lives with diabetes, I am so grateful for all the research the diabetes community is doing to find a cure and to provide technology to improve the quality of life of those living with diabetes.

The years that followed my daughter’s diagnosis were difficult, filled with stress and sleepless nights, but in the end, our family became stronger and I am happy to report that Leah is a happy and healthy 15-year-old young woman.

— Ed Nykaza, PhD, Lead Data Scientist at Tidepool