At T1D Exchange, we know that sharing the real-life experiences of those living with type 1 diabetes (T1D) is crucial for building a supportive community. Personal stories give us valuable insights that can inspire research, innovation, and advocacy. 

Our “Share Your T1D Story” campaign highlights the unique journeys of people managing T1D. By sharing these stories, we aim to highlight the daily challenges and victories of living with diabetes. From the shock of diagnosis to the routines of daily life, each story shows the resilience and strength of our community members.  

By sharing these experiences, we can advocate for better resources, stronger support networks, and improved treatments. These stories help us build a more connected and informed community dedicated to improving the lives of everyone affected by T1D.  

Below are some raw and unfiltered testimonies from real Registry participants. These stories touch on many aspects of daily life with T1D, from managing glucose levels and dealing with misconceptions to finding support and celebrating personal victories. Each account is a testament to the strength, perseverance, and hope that define our community. 

 

Real stories from Registry participants  

 

Lauren — Registry participant since 2024

I embraced my diagnosis and became an advocate. I never saw T1D as something to be ashamed of. My classmates were supportive, and when I got my insulin pump, they thought it was cool. I became a youth ambassador for the American Diabetes Association, helping to raise over a hundred thousand dollars in middle school. In high school, I started volunteering with JDRF and continued volunteering with them through college.  

One day at college, I was sitting in calculus, and my Medtronic sensor was beeping that I was high. I went to clear the alarm, and someone tapped on my shoulder. I turned around to apologize for the beeping, and a woman was holding up her matching Medtronic pump with a giant smile. We have been best friends ever since.  

 At this time, I also learned about diabetes-alert dogs, and after living with a pet dog who learned to alert me after a bad low, I realized what an amazing tool a dog could be. I applied and was placed with a yellow Labrador in 2016. Her cold nose and warm heart brought my A1c from a struggling high-7 to mid-8 down to a solid mid-5. My A1c has been below 6 for over 6 years, thanks to her.  

 She outperforms my Dexcom and helps me maintain tight blood sugar control. She also aids my advocacy, demonstrating how a dog can be more effective than even the best technology (and I’ve tried them all, from Medtronic to DIY Loop to Tandem X2 and now the Tandem Mobi).  

 

Hailey — Registry participant since 2021 

By May 2021, I noticed some alarming changes in my health. I was losing significant weight, which I initially attributed to my new rock-climbing hobby. However, I also felt extremely tired and constantly thirsty, and my appetite fluctuated. My vision became blurry, and part of my arm went numb. Concerned, I visited my PCP for bloodwork, which revealed a shocking blood glucose level of 400.  

A nurse practitioner called that same day with the news, and I was immediately admitted to the hospital. I spent three days in the pediatric wing, learning how to manage my condition. While my PCP wasn’t very helpful, my diabetes educator provided invaluable support and information to help me navigate my new reality.  

Since my diagnosis, so much has changed. My company has grown from just me to a team of 6. I bought a home in Tulsa and built an incredible community of friends and loved ones. I’ve continued to travel, camp, rock climb, and pursue adventures. Currently, I’m training for my first sprint triathlon, which is happening this weekend! 

Living with T1D has brought challenges, but it has never stopped me from designing and living the life I want—a life that now includes a few more fruit snacks. 

 

Miles — Registry participant since 2021 

I was diagnosed with type 1 diabetes in 1994 when I was six years old. After weeks of illness, my pediatrician sent my family and me to Children’s Hospital in Washington, D.C. After the diagnosis, the doctors were quite rude, short, and disrespectful to my parents for the next year until we decided to travel an hour to Baltimore and visit the endocrinology department at Johns Hopkins.  It was a life-changing decision, and their team was extraordinary. 

I have worked, volunteered, mentored, and been a Board Member for JDRF for years.  I participate in various clinical trials to improve the lives and realities of other young diabetics and their families. I worked at Stanford Diabetes Research Center for two years as a Behavioral Health Specialist, then attended USC Marshall School of Business with a focus on med-tech and healthcare. 

I played varsity men’s soccer at the University of Michigan, I founded and run Cuba Skate, Inc. (a 501c3 nonprofit org), and I work out and exercise daily to manage my health. 

 

Yaffa — Registry participant since 2021 

When I was 62, my oldest grandson was diagnosed with type 1 diabetes. I felt guilty because I have three autoimmune diseases and had passed one to my two children. To better understand what my grandson was dealing with, I bought a glucose monitor and found my blood sugars were in the normal range. However, a few years later, I noticed a slight rise in my blood sugar. After a five-day course of steroids for poison ivy, my blood sugar stayed in the 300-400 range even after stopping the medication. I suspected I now had a fourth autoimmune disease. 

I visited an endocrinologist, explaining that I likely had type 1 diabetes, which she confirmed after some tests. She explained that the steroids had jump-started my diagnosis rather than causing it. I was sent home with long- and short-acting insulin. 

When my grandson was diagnosed with Type 1, the other three grandkids were tested for their risk. One of them, his brother, had a high probability and was diagnosed about a year after me. Now, when we all go out to eat, it’s quite a sight with 3 of us injecting insulin—it’s a family affair! 

 

Rasheed — Registry participant since 2023 

Everyone has a memory that stands out as a significant part of their life. For me, it was October 22, 2004, when I was seven years old and in the second grade. That year, I was diagnosed with type 1 diabetes, and my life changed forever. 

When the doctor told my parents and me about the diagnosis, I had no idea what was coming. I was hospitalized for a week, confused by the constant finger pricks and shots before meals. A nurse explained that my pancreas had stopped producing insulin, causing high blood sugar levels. When I was admitted to the ER, my blood sugar was 850, and the doctors said I was seconds away from a coma. 

After leaving the hospital, my family watched as my mom gave me shots and checked my blood sugar, finding it fascinating. At school, my classmates were curious about my absence. I wasn’t ashamed to show them my routine, but it made me feel different. I had to check my blood sugar before recess; if it was low, I would miss playing with my friends. It took time to adjust, but over the years, I gained confidence and started pulling out my insulin in class without hesitation.  

This year marks 20 years since my diagnosis. While some might see it as a negative memory, I couldn’t be happier. Diabetes taught me independence, self-reliance, and a glass-half-full perspective. It shaped me into a strong, responsible, and disciplined young adult. 

We deeply appreciate our participants for sharing such thoughtful and inspiring stories—their contributions help paint a comprehensive picture of life with T1D. We are committed to continuing this project and welcome more stories from long-standing Registry participants and new participants. 

 

If you or someone you know lives with T1D and is interested in sharing their story, we invite you to sign up for The T1D Exchange Registry and join our campaign. Please help us build this invaluable resource. Together, we can make a difference and work towards a brighter future for everyone living with T1D. 

Log in to your Registry account or sign up today to share your story!