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From the Community: Jason M.

June 18th, 2018

Jason first responded to our invitation to share his diabetes story before he became our Data Science Intern for the summer. As you’ll soon read, Jason has an appropriately analytical approach to his diabetes, one that I’m sure some of you can appreciate. If you’d like to share your story with us, fill out this form and Anja and I will be in touch.

-Christopher Snider, Community Manager

Diabetes is a bit of a morbid topic. Most people do not understand the physical, mental, and financial ramifications of having diabetes. Even talking with others living with diabetes can be difficult. All of us have our own personal battle with diabetes and there is a lot of shame that comes from not having perfectly controlled glucose levels. I was asked once, ‘You’ve lived with diabetes for 20 years. Shouldn’t you be a master at controlling it by now?’

I really wish I had an easy answer to that question. There are so many resources, tools, methods, and people who really try to help others, but diabetes is a terrible monster of a disease and being human makes it even harder.

I often see other people my age or younger in my Twitter feed going to the ER with DKA and having painful struggles with their diabetes. I really empathize with them and I often find myself tearing up about it. It motivates me to make a change and start thinking of new ways to help. When I see others posting their successes, even the little ones, it gives me hope that I can do the same.

The first time I saw my diabetes data in Tidepool, I felt like I was contributing to something. Like I was a research assistant, and by continuing to live with diabetes, I could make a real difference in the world. I think Tidepool has the potential to become the pioneer in data empowerment for people with diabetes.

I love to know that I am part of something that is helping others. So much is going on in the #WeAreNotWaiting community, and it excites me to be a part of this movement.

Many things affect our glucose levels, and being able to see all of that happening in near real time with a CGM is almost like having a super power. Every Tuesday and Thursday at 9am I have a really stressful college course on data analytics. Sure enough, every time I enter that class, my glucose levels start to spike. The moment the class is over, my levels start to drop again – no insulin required. This type of biofeedback gives me a lot of insight into how to keep my stress levels low.

I was diagnosed at age 5, so I’ve had a lot of practice at insight-gathering and undertaking some big self-experiments to find out what works best for me. A few months ago I was able to start “looping” myself, and I was both amazed and disappointed. I learned that there are hard limits of how fast the body will process insulin and glucose. No matter how much insulin I give or when I give it, I just can’t prevent the spike after eating pure sugar. One key to control is in the macronutrients. I can’t balance my glucose levels after 60 carbs of skittles, but I can balance it after 60 carbs of high fat ice cream. The looping systems try to account for these variables in how our bodies digest food using the glycemic index, but everyone is different.

I think the real benefit looping can bring is a diabetes decision support system that can adjust to your body with ANY type of therapy, not just a pump & CGM. This type of technology could be used by anyone in the world with a cellphone. This is what I am really excited for. I think once we can perfectly predict what happens when you eat a certain amount of fat, carbs, fiber, and protein – closed loop systems and personalized diabetes control will really shine.

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