Teenager Builds T1D1 App After Diagnosis with Type 1 Diabetes

Diabetes

T1D1 (which stands for type 1 diabetes from day 1) is an app that was created by a newly diagnosed 13-year-old, Drew M, to help people better manage their condition. Determination coupled with being well-versed in coding led Drew to create this app almost immediately after diagnosis.

I thought it would be nice to hear Drew’s story and how he took his new diagnosis as an opportunity to help others.

Hi Drew, thank you for taking the time to speak with me. I know you were just diagnosed in September of this year. What signs were you showing and what made you see your doctor?

The only reason I went to my doctor was because we noticed I was losing weight while growing. I had lost more than 10 pounds and had grown over an inch over a three month period. I went to my pediatrician and they drew some blood. We left the office and before we even got home, my mom got a call from them and they said, “pack a bag and go to the ER at Children’s National right now!” My blood sugar level was 529 mg/dL and I apparently had large ketones in my urine test.

Drew recovery

Photo credit: Laura Mendelow

I know you were hospitalized, did you get a good education on how to manage this condition?

Yes – I think the diabetes team at Children’s National Hospital was awesome! They had a whole team of people that kept coming in to visit with me. Because of COVID, all group classes were now given one-on-one, so I got a great education.

Although I missed school when I was in the hospital, I still felt like I had math class because there was so much to learn about calculating my numbers and carbs. It felt like a lot to take in, but they did a great job explaining it to me. They taught me how to calculate my insulin doses and count carbs and I practiced on a sponge.

My grandma was diagnosed with type 1 about 10 years ago, when she was 61, so I was pretty familiar with seeing her managing it. That also helped me a lot knowing someone who has T1D so I wasn’t as scared when they told me that I had this disease.

I know you have a passion for coding and had just finished taking a summer course. At what point did it dawn on you that you were fully capable of creating something like this?

We were joking around about it with the nutritionist, Alex, that morning in the hospital. She was showing us some apps to help us out and said it was annoying that there wasn’t one app that did everything. My dad said jokingly, “Don’t worry, Drew will build you one.” When we got home I started looking at different ways to build apps and there are so many platforms now to choose from. I started playing around with it that same day and realized I had enough knowledge of coding that I could actually do it!

The stuff I was doing over the summer was just for fun because my soccer camp and my overnight camp got canceled because of COVID. Basically, I was bored and taught myself how to code using YouTube videos and a few classes that my dad shared with me. I learned how to code video games using Unity, but nothing like this app! I figured I knew enough about how to code that I could figure out how to build an app. It was like a cool challenge to take on.

My dad is a programmer but he had never built an app before either. But I figured if I got stuck, he could help me out. But, he really didn’t know anything about the program I was using, so a few times I got stuck and my dad was like, “I have no idea how to help you with that one, you’ll just have to google it.” So I did.

The platform I was using was limiting, like I couldn’t create a drop-down menu so I would have to learn how to go around the system to create some of the functions I wanted. I just kept teaching myself new things online until I found things that worked.

Drew with his father in the hospital. Photo credit: Laura Mendelow

I know the doctors at the Children’s hospital expressed a desire to create an app that was different than those that already existed. What was their wish list?

Well, they wanted a few things. First, it had to be simple and easy to use. And, it had to be something that a person could use from day one of diagnosis. There are so many apps out there but they may require you to have a CGM or a pump or they’re just too much for someone who is recently diagnosed and too complicated for kids to use. They wanted an easy way to calculate your insulin dose and also log your glucose levels.

People who are newly diagnosed are asked to call in every day after diagnosis for about 2 weeks and report their numbers from the last day (e.g. blood sugar, carb count, insulin taken for every meal, snack and at 2 am). So having a feature where you could email your logs straight to your doctor was a big request as well.

Then, they had more detailed ideas like the option to round to the nearest half or whole number. I didn’t even know some pens have half units and others only have whole units. The doctors knew what people needed, and I knew what I wanted as a person who was newly diagnosed, I just had to figure out how to program it on the app.

Your app has become quite a success! Now available on Android and iPhone, T1D1 has over 9,000 downloads already. What sets your app apart from the rest?

I think people like that the app is simple, yet does everything that they need right from the beginning of being diagnosed and has some cool features (like different settings for different meals) that other apps don’t have. Plus it’s completely free and has no annoying ads or any kind of in-app purchases.

Also, I think they like that it was created by a kid and not a big company, so they know I’m not out to make money or collect their data. I’m new to the T1D community but I can already see that people get annoyed when they see companies using their disease to make money off of them.

How long did it take to create this app and can you tell us a little bit about the beta testing process?

The first version took only about a week, but it was super simple. It was basically just a calculator with a few changeable settings. We then showed it to Dr. Marks and the diabetes team at Children’s and they came up with some suggested features. I would build in the features and then send it back to them for review.

Once we had a few features like a bolus calculator and an insulin log, we then reached out to online diabetes communities to see if anyone would volunteer to help us test the app. My dad reached out to groups on Facebook and Reddit and asked for volunteers. I remember that night, my dad was overwhelmed with how many people wrote back offering their help.

At that time, it was only being tested for Apple and we had about 70 beta testers. After a lot of testing, the app got published in the Apple Store on Halloween. So, that was about a month and a half after I started working on it. Then, a few weeks later we were able to get it published in the Android Google Play store.

I know you have received both national and international attention (Fox News, NPR and the Jerusalem Post to name a few!), how does that make you feel?

Honestly, I was so surprised at how it took off. It makes me feel really good knowing that the app will now reach so many more people. One of my main goals is to make the app accessible to as many people as possible and this publicity really helps me achieve that goal. Anyone who has T1D knows how tough it can be to manage this disease 24/7. Hearing stories about how I’ve really helped others, makes me feel so happy and helps me get through the tough moments. And, these stories keep me motivated to continue working on the app to make it the best I can.

Drew with family. Photo credit: Laura Mendelow

I know you are hoping to keep this app payment-free and ad-free. How can people help support you?

If people want to support the app, they can donate on the “support us” page on the IOS version of T1D1 or through the website T1D1.org. All donations are used to keep the app live and make enhancements. All profits get donated straight to JDRF. Another huge way to support us is to spread the word to their diabetes team and by posting about it on social media!

You are clearly an ambitious young man with a ton of determination! Do you see yourself doing more things with coding and diabetes? What do you think you would like to do when you are all grown up?

This opportunity to make an app really helped me to see the possibilities of being a programmer or developer when I grow up. It’s been really cool to talk with other organizations like Tidepool to learn how they integrate technology into improving people’s lives with diabetes. It’s awesome to think that I can use my coding skills to continue to help others with T1D. I now have a pump and am amazed by the pump technology. Who knows what others will create in the future. I’d love to take part in creating that new technology with them to help make all of our lives easier.

Thank you so much for taking the time to speak to me. You are a perfect example of someone who took an unfortunate situation and took the opportunity to help others.

I wish you much success and look forward to watching you thrive in both your future professional endeavors and managing your type 1 diabetes!

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