Happy National Diabetes Awareness Month from your friends at T1D Exchange!
This month we’d like to recognize our T1D Exchange Registry participants who have shared their stories about life with type 1 diabetes (T1D).
These narratives carry a common thread: one of resilience, empowerment, and a commitment to achieving life goals in the face of adversity. They represent the shared experiences common to everyone affected by T1D.
Let’s celebrate together this month. Start by exploring this collection of impactful stories.
Become part of our “Share Your Story” campaign — a collective voice that amplifies the strength of our community — by spreading T1D awareness and inspiring others. The T1D Exchange Registry is also a way for you to participate in research to improve T1D treatments, care, and outcomes.
Meet Jayme!
At the age of 22 and in my final semester of college, I was diagnosed with T1D. Because I was diagnosed after
leaving home, no one in my family seemed to understand T1D fully. I’m incredibly grateful that my fiancé, at the time, now wife, went through training with me and has been a true partner through it all.
I have been incredibly blessed to work for a T1D insulin pump manufacturer which has helped to reduce my T1D cost burden. While T1D has complicated my life in many ways, it has made me incredibly grateful for the little blessings along the way.
Meet Cody!
I was diagnosed with T1D in 2003; I am now 37 and living the dream with one kiddo at home who’s also T1D, a wife, and a dog for support. Without diabetes, I don’t think I’d be as healthy as I am today. I love pushing myself to the limit while riding my bike and exploring mountain peaks. Team Novo Nordisk and Team Type 1 have greatly influenced and inspired me to stay healthy and push myself forward.
Meet Carmon!
I was diagnosed with T1D in 1969 as a 13-year-old. I’m still in good health, with 55 years of highs and lows. I have many stories about food, friends, and occasional hospital visits. I use a CGM but skipped getting an insulin pump. My
A1C is 5.4, but it hasn’t always been an “easy” path. One of my many stories includes managing a breast cancer diagnosis 18 years ago.
Meet Paul!
I was diagnosed as a 5-year-old, 25 years ago. There is no off switch for diabetes, and you can’t separate it from your decisions that impact the rest of your life. It is always there, requiring your attention. It has taught me how to be more patient, resilient, and strong in the face of everyday challenges. Advancements in diabetes tech have allowed me to live my life fully and overcome diabetes-related challenges.
Meet Will!
Diabetes once was a great burden on my soul! I mean, how could I, a 20-year-old, fit and carefree young adult, be diagnosed with a chronic condition that would alter my entire world? I couldn’t fathom the truths about diabetes.
For over a decade, diabetes belonged solely to me. I didn’t share it with anyone. This wasn’t by choice; it was just mine. I spent years figuring it out alone. For me, this meant emergencies in which cars were crashed, EMTs administered emergency glucagon, etc. This went on forever. I would ration insulin, not knowing that this was truly what I was doing. To myself, I was only lessening the burden of expensive meds while covering the costs of living with a growing family.
All of this changed in 2018 when my 7-year-old daughter found me incoherent in the bathroom. When I woke up, my wife told me that she asked, “What will I do without him?” And from that moment, I buckled down into diabetes research. At the time, I didn’t know about different insulins or technologies.
For 15 years, I didn’t know anyone else who lived with T1D, but once I set out on a path to change my habits and lifestyle, I found community! Over the last 6 years, my A1C has been below 5.6, I’ve spent about 90% of the time with my glucose in the target range, and I have a community around the world!
Today, I host the Chronically Will Podcast, which has real conversations with the community that need to be heard. I’ve recorded with people from all around the globe. My passion is helping others lessen the burden of T1D while gifting all my lived experience, education, and resources to all.
Meet Jasmine!
I was diagnosed with T1D in 2014, a year after giving birth to my first son. I had gestational diabetes during my pregnancy, and after giving birth in the hospital, I was put on a “diabetes diet” and given no carbs.
For this reason, by the time I was discharged a week later (due to complications), my blood sugar was normal. A few weeks later, I noticed increased thirst, frequent urination, and dry mouth. I was starting to get very worried, so I went to the doctor, and they diagnosed me with type 2 diabetes.
I started on a pill, and soon, I started to lose weight at a rapid pace; I went from 130 to 95 pounds. I knew something was still not right, so I went to another doctor (the first one simply just tried to change my medication). The new doctor immediately thought I had T1D but didn’t want to assume until it was confirmed by lab work. My A1C was 13.8!
Once I started on insulin and a good meal plan, my blood sugars improved, and my weight was regulated. It was scary because I was told I could have gone into a coma from such high blood sugar. That’s why it’s so important to listen to your body, know changes, and talk to your doctor. If you aren’t comfortable with what you’re hearing — seek a second opinion.
Meet Ric!
After a prolonged battle with severe acute pancreatitis, which led to the removal of over two-thirds of my pancreas, I now live with diabetes. Surviving pancreatitis was incredibly difficult. While diabetes has its challenges, it’s almost easy compared to where I started.
Meet Kristina!
I was diagnosed right before I turned 12 years old. With a great endo and insulin pump, I was able to keep playing sports. I played volleyball year-round, including the junior Olympics, with an elite club in high school. Diabetes didn’t stop me from getting athletic and academic scholarships for college, either. I have been able to live and enjoy my life, and I even have two great kids.
Meet Susan!
I was diagnosed in 1963 at age 7. That was before disposable syringes, blood glucose monitoring, or multiple daily injections (MDI). A T1D diagnosis led to once-daily long-acting insulin treatment, careful meal planning, and timing. I used a glass syringe with a steel needle (the size of a darning needle).
I was too little to do this all on my own. My mom stepped up and took control of the daily urine testing (a test tube and fizzy tablet that changed colors depending on the amount of sugar in my urine).
If I needed to know my blood sugar, I had to go to the hospital for a blood draw and wait for test results — usually the next day when the doctor’s office called. It was impossible to know what my blood sugar was. I made it through grade school, middle school, and high school — graduating with honors, although the doctors had told my parents I likely wouldn’t live until I was 18 years old.
I went to college, graduated with an education degree, and worked for 35 years before retiring in 2013. I have two adult children and five grandchildren. I transitioned to an insulin pump around 2000, and I’ve since graduated to an AID system, the Tandem Control IQ. I have always hoped for a cure, and I’m still waiting and hoping. I’m thankful for my family, great endocrinologists, and health insurance.
How can you share your story?
It’s easy. You can share your story by joining the T1D Exchange Registry this November! The more people we have in our Registry, the more we can study different aspects of living with T1D — including your experience with diabetes burnout, medications, technology, parenting, and more. The Registry is open for all people who live with T1D, reside in the United States, are at least 18 years old (or have a child under 18 with T1D), and are English literate.
- The Renal Warrior Project. Join Now
- Source: https://t1dexchange.org/celebrating-national-diabetes-awareness-month-with-registry-participant-stories/