March is National Autoimmune Awareness Month and we asked our Youth Ambassadors to share their stories about living with type 1 diabetes (“T1D”) and other autoimmune conditions.

T1D Symptoms and Diagnosis

 

Youth Ambassador Cooper (and “Among Us” fan) created a fun comic to raise awareness about the symptoms of type 1 diabetes, including increased thirst, frequent urination and weight loss – all of which were symptoms he experienced when he was diagnosed at three years old. Cooper was also diagnosed with Celiac disease  one year to the day after being diagnosed with T1D. He said that having Celiac doesn’t impact him in anyway – he just knows he can’t eat wheat.

Cooper also has a diabetes alert dog named Shadow and explained to us that “Shadow alerts me or my parents when my blood sugar goes low or high. Sometimes she even alerts us before Dexcom. She is super smart.”

Cooper shared with us that one of the biggest impacts diabetes has on his life is having to wake up early in the morning to treat lows. He said he usually has a juice box or gluten free gummy bears (the grey gummy bears are his favorite).

Cooper is a regular participant in our Blue Crew meet-up events – an opportunity for grade school aged kids with T1D to get together for an hour of fun and camaraderie. He wanted to make sure other kids knew that when you first get diagnosed with diabetes, it can be really hard, but once you get used to it, it’s not as bad.

 

Youth Ambassador Savannah also shared her diagnosis story and how she went from the hospital to initiating and leading an annual Walk at her school:

On October 10, 2016, I wasn’t feeling well. I was drinking a lot of Gatorade and and eating a lot of soup. I was at my Grandma’s at the time. My throat started hurting and I was using the bathroom a lot.

My Grandma started getting worried about me, so she called my Mom. My Mom rushed over and asked if I was okay and I said, “No.”

She took me over to my doctor. When I got there, they checked me for strep throat and the flu and those came back negative. They decided to check my blood sugar and check my urine for sugar. I felt really scared about them pricking my finger. After they pricked my finger, it said “high” and we didn’t know what that meant but a whole bunch of doctors came in. They told us they called the ambulance to pick me up and take me to Jersey Shore Medical Center.

I was scared.

The doctor let my Mom and Dad take me to the hospital because the ambulance was taking a long time. When we got to the hospital, they put on my hospital bracelet and checked my blood sugar again. It was 678 so I had to go to the pediatric ICU. I was in the ICU for a little less than 2 day so they could slowly bring down my blood sugar. My Mom got to stay with me in the hospital.

I did not understand what was going on and the nurses were always explaining diabetes to us. I got moved to a normal hospital room after that and spent 1 day in there. Then I got out of the hospital and I was so happy to get out of the hospital, but we still had a lot to learn! We are still learning 4.5 years later!

I got home and asked if I could have a peanut butter and jelly sandwich but of course, the answer was no. We had a lot to learn about food and when I wanted to eat, I had to wait thirty minutes. We had to learn how to count carbs, calculate insulin and what foods were better for me.

When I got home, I wanted to go back to school, but my Mom needed another day. When I went back to school, I felt different. I also had a very nice aide named Claudia that spent the day with me and she is still with me to this day!

I was 5 years old in Kindergarten and my whole world changed. My friends and teachers all supported me. One month after I was diagnosed with diabetes, I had my first Breakthrough T1D One Walk at school. We made Team Savannah t-shirts and sold 121 in four days! I loved this. Now this is something we do every November at my school! We sell shirts and fundraise to bring awareness to T1D.

Dual Diagnosis

A number of our Youth Ambassadors live with a secondary autoimmune disease, the most prevalent have either Celiac’s disease or Hashimoto’s. We know, unfortunately, that people living with T1D are more likely to have a dual diagnosis and we asked for the YAs to share their stories of being diagnosed with a second Autoimmune Disease.

Life changed in 2017 for Youth Ambassador Gabriella, when she was diagnosed with not one, but three autoimmune diseases:  Lipoatrophic Panniculitus, T1D and Celiac disease.

 

Talking About Common Misperceptions

Most everyone has had to respond to a misperception about living with T1D. Here are three of the most common misperceptions that Youth Ambassador Abby Temple has faced and how she responds.

Hi! My name is Abby Temple. I am 12 years old and was diagnosed about a year and a half ago on July 18, 2019. I love to dance and I am on my studio’s competitive team. In my day to day life I see many common diabetes misconceptions and I thought I could share a few.

1- You can’t eat candy or ice cream or other sweet foods. This is false news!! Diabetes has nothing to do with eating sugar, just your BLOOD sugar levels. People living with T1D can eat anything, we just have to take insulin. We can receive extra insulin via injections. These shots don’t hurt that bad, just a little!

2- You get Type One by eating too much sugar. Again, this is false!! You can be healthy as a horse and still get diagnosed with T1D. You get T1D once your pancreas stops producing insulin, something no one has control over. T1D is an autoimmune disorder, it is not contagious, and you can’t do anything to prevent it.

3- All diabetes are the same. This is NOT true. Like stated above, Type One diabetes is when your pancreas, an organ you have, stops working. Type Two diabetes is when your body stops responding to insulin. This can be prevented by maintaining a healthy diet and exercising.

Doing What It Takes

Living with T1D isn’t easy, but our Youth Ambassadors will do what it takes to accomplish their goals.

Jake Halperin is a Youth Ambassador who has been living with T1D since 2012.

I decided at a young age that I would not let T1D impact my life goals. I love nature, and have as long as I can remember. So naturally I want to do a lot of outdoor activities. One of the most daunting and difficult quests I want to do is hike the Appalachian trail. A 2,190 mile trail that takes 6 months of dedication to complete.

There is only one potential set back: type 1 diabetes. So that would mean on top of all the food and gear I would have to carry on my back, I would have to carry all the things that a diabetic needs. From insulin to test strips . . . all of it has to fit in a backpack.

That isn’t the only set back. There is also the fact that I would have to stop more often while on the trail because of my blood sugar. That could result in 2 miles of wasted time, in just one day. I would also have to hike into towns more often to pick up more insulin and other supplies. All of these setbacks would make it that much more difficult to complete the trail.

One time while I was backpacking I stopped to take a photo of an outlook. I took out my pump to dose and a woman recognized it and she explained that she was diabetic and she shared her story with me. Her story inspired me because it was the first time I met another diabetic who is conquering crazy hiking trails. She explained how she also had setbacks and it really inspired me.

Hiking the Appalachian Trail isn’t the only example of when there have been setbacks because of my diabetes. Whether it’s playing sports or having a sleepover, there is always some type of setback. But no matter what, it usually ends up working out.

These setbacks have actually resulted in some of my greatest memories. To sum it all up, having diabetes has made so many things in my life challenging. Whether it’s things I love, like hiking, or things I don’t enjoy as much, like school, everything ends up working for the better because I feel like my accomplishments are even more significant than they would otherwise be.

Greatest Accomplishments

A common theme amongst the Youth Ambassadors is that they continue to amazing things while living with T1D. We asked for them to share their greatest accomplishments:

Hi! My name is Avery Glancy. I’m 15 years old and I live in Hazlet, NJ. I have been living with type 1 diabetes for 5 years and I am currently a Breakthrough T1D Youth Ambassador for my 2nd year. Throughout my time with diabetes I have been able to do some pretty amazing things through Breakthrough T1D and other experiences. But when I think of my greatest accomplishment I immediately think of how I have been more confident with my diabetes since I got diagnosed.

When I first became diagnosed in 2016 I was very shy about and I only wanted my closest friends and family to know about my diabetes and nobody else. Now I am more confident in telling other people that I have diabetes and not only that I have diabetes but all about diabetes and how it works. Telling my story is something I enjoy telling people. I also love to answer there questions and they always end up being fascinated!

Being confident with diabetes to me also means being able to freely wear my devices in public. I don’t mind and I actually think it’s cool to show them off in public! If there is another person with diabetes around who sees my pump or Dexcom I hope I would inspire them to wear it on there arm. That’s how I became more comfortable with wearing my pump and Dexcom on my arm . To me it’s important to be confident with what you have and embrace my diabetes.

Which leads to my favorite memory with my confidence. Recently in July, I participated in a photo shoot with the CGM adhesive company Skingrip and I loved it. I modeled the new adhesives and that was featured on their Instagram. When I saw myself on Instagram I was so excited! It felt great and I loved to see myself. If you told me 5 years ago that I had done that, I wouldn’t believe it. When I first diagnosed I know that for sure I never thought I would be as confident as I am today and that to me is my greatest accomplishment.

Avery

Hello! I am Olivia Trotta and I am a type one diabetes. I was diagnosed when I was 6 years old, in August of 2013. After being diagnosed I was scared and overwhelmed. I thought that I couldn’t do anything. It isn’t easy living with this disease. It is 24/7, constant management. However I have realized that diabetes can not and does not hold me back. Since then I have accomplished so much.

I believe that one of my biggest accomplishments is being a competitive gymnast . When I was 8 years old I began gymnastics classes. It was scary going into this because I didn’t know how to handle it with my diabetes. That didn’t stop me though! I grew a huge love for the sport and began leveling up quickly. At the age of 10 I had joined the competition team.

I am happy to say, I have no regrets. Gymnastics is an amazing sport. I am constantly pushing myself to learn new skills and do more. Diabetes has never stopped me from doing that.

Being a gymnast has taught me so much about Diabetic management. It has helped me learn how strong I am! It gave me strength both mentally and physically. It gave me confidence to try new things. It’s helped me realize that diabetes can not and does not hold me back.

Looking Ahead

Sometimes a diabetes diagnosis alters the path that we are on. So we asked Youth Ambassador Virginia Van Mater how diabetes altered her career path.

In all honesty, diabetes has not encouraged me to become a doctor, nurse, or diabetes specialist. In fact, I don’t really want anything to do with the development and research of type 1 diabetes. However, it did spark an interest in chemistry, genetics, and biology. Granted my eighth grade science teacher had a hand in that too, but for as long as I could remember, I wanted to be an artist. I loved drawing, design, and all sorts of things like that.

But one day, roughly four years after my diagnosis, I had a thought. Why are my beta cells killed off by my T-cells? What happened that led to the development of my condition?

From there, my interests began to shift from drawing to research and microscopes, from goals of Full Sails University for art to Princeton for chemistry and astrophysics. I truly believe that my diagnosis set me on a path towards science, one that I am driven to and intend to follow.

We hope their stories have inspired and encouraged you. Living with an autoimmune disease – which can often be invisible and misunderstood – hasn’t stopped these kids from continuing to thrive.

 

 

We thank Novo Nordisk for sponsoring the Youth Ambassador Program.