Teenager Builds T1D1 App After Diagnosis with Type 1 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!

Source: diabetesdaily.com

Mark Andrews: A Tight End with Type 1 Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Katie Doyle

The Baltimore Ravens didn’t choose just any offensive lineup during the 2018 NFL draft – a key part of their strategy is Mark Andrews, a tight end from the University of Oklahoma who has been managing his type 1 diabetes since before he started playing football and into his rookie season.

Beyond Type 1 spoke with Mark about his pre-game rituals, how technology like the Dexcom G6 helps him stay on top of type 1 on long Sunday afternoons, and why it’s important to use his high-profile career to educate and advocate with National Diabetes Awareness month coming up.

How have you managed your diabetes through major life changes, like going away to college, playing a division 1 sport, or going through the NFL draft?

I was diagnosed at 9 years old, and it was the first time I ever saw my dad cry. At that moment, I knew it was serious because it wasn’t something my dad did very often. And since then, my family has been my rock. I was lucky enough to have a dad who was also a doctor and had an understanding of diabetes when I first was diagnosed.

Personally, I wasn’t very nervous. I knew that one day I wanted to move out, play football at a Division 1 level and ultimately play in the NFL. It’s something I was always very diligent about. I wasn’t going to let my nerves or anything else get in the way of that. My mom probably worried most, but my dad was instrumental in instructing my whole family in what to expect and what to know. I rely on them a ton. Using a CGM allows them to be a part of it and know my numbers at all times. It gives them peace of mind to be able to check in on me.

Mark

Image source: Beyond Type 1

How does your family support you from across the country?

My mom will always be my mom, so she still checks on me regularly. Last week, she texted me and said, ‘Hey, I don’t think you have enough complex carbs on board, you’ve been going low and trending low a lot. Just want you to eat something that gives you more complex carbs. I love you, hope you’re having a good week; I’ll talk to you soon!”

It’s awesome to get a text message like that and know my family has my back. After that, I ate a peanut butter and jelly sandwich just to have that background complex carb and went about my day. It’s always good having people look out for you — the more eyes you have on someone with diabetes, the better.

I’ve got a teammate right now named Orlando Brown whose dad had diabetes so he’s incredibly well-informed. He was my college teammate and now he’s my NFL teammate with the Ravens. He’s always wondering what my numbers are, and I actually share my numbers with him from my Dexcom.

When did you feel comfortable enough to talk to your friends and teammates about diabetes?

At first, I remember feeling a little bit reserved and not being totally open about it. I’d go hide in a corner to test. I also remember the first time my friends saw me testing my blood sugar. I was 10 or 11 years old, and they saw blood and thought it was cool. I was kind of in the spotlight because they were so interested in what I was doing.

That opened me up to be more vocal and to share what I’m doing and how I deal with things. After that, I became really comfortable sharing what I deal with having T1D and how I deal with it and sharing with others. I was very open talking to my coaches, and I had my parents to help me out with that, and they still do that to this day. Ever since then, I’ve always wanted to talk about it and shed light on what people with diabetes have to do.

Tell us about your pre-game ritual.

I do something a little bit different: I wear a pump, so I use that for basal (25%) and I use Lantus for my other type of basal (75%) on a normal day. But on a game day, I’ll go 100% Lantus — that allows me to be off the pump for long periods of time but not have to worry.

Knowing your body is key. Knowing what I put in my body and how it will affect me is something that I feel has been instrumental for my health. I’m a big fan of complex carbs; I eat peanut butter and jellies, especially on game days or the day before a game, just allowing myself to have that complex carb to hold me over while I’m exerting a lot of energy.

Having my Dexcom, and the way it allows me to see my blood glucose trends and see what foods react a certain way has been huge for me. There’s a lot that goes into diabetes management, and I think it’s incredible that I can rely on Dexcom and not have to prick my fingers all the time. It really sets me up for success on the field.

Who are your role models?

I didn’t know anyone else with diabetes growing up, but I have my dad, who is extremely knowledgeable and always researching different things. He’s the reason I went to 100% Lantus for game days.

I can remember, at a young age, having diabetes and seeing Jay Cutler in the League, and being able to tell myself that it’s possible. I adopted a mindset that this disease is a part of who I am, but it’s not going to define me and it’s never going to stop me in achieving my dreams. Football is my passion, it’s what I love, but now it’s my job, and diabetes is something I refuse to let affect my job.

You seem like you have a ritual down for games, but how about during the NFL draft? How were you feeling then?

There’s so much work that had been put into that moment, from my mom driving me to soccer practice, to all those hard hours put in on the field, it all lead to that moment of actually playing in the NFL. It was kind of scary to know that that you’re putting your future into someone else’s hands — into 32 organizations’ hands — but this has been my dream for a very, very long time.

Why is it important for young athletes with type 1 to have role models?

To be put on this stage, I’ve always wanted to give back and for me, that’s with diabetes — that hits home for me. Helping kids with diabetes is something that I’ve found has given me the most reward: raising awareness and talking to people about how I use technology and what I do with it, it’s to help people with everyday life and share some of that.

I’m going to work as hard as I can to be the best tight end that I can be, and hopefully one of the premiers tight ends in the League. I want kids to see where I’m at today, like I saw Jay Cutler, and I hope it inspires them to go out there and play sports and be active — to follow their dreams, no matter what they may be. A professional football player? Great! Go out and achieve it. Or if anything else, you know, This guy’s playing football at the highest level, then I can do anything else!

Source: diabetesdaily.com

Diabetes Care from Parent to Child: Passing the Torch of Care

This content originally appeared on diaTribe. Republished with permission.By Kerri Sparling Transitioning care from parent to child can be a stressful time for families with diabetes – six strategies on how to reduce the burden  Transitioning from my parents being in charge of my diabetes to assuming full care myself didn’t happen overnight. It was a […]
Source: diabetesdaily.com

Tested: Book to Inspire People With Type 1 Diabetes into Action

Tim Hoy, an author of several books, has written a book for people with diabetes called Tested. He was diagnosed in 1976 and has lived with type 1 diabetes for 43 years. Tim grew up in a small rural community in New Zealand and in his own words has “gone on to enjoy an amazing […]
Source: diabetesdaily.com

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