Kids with type 1 diabetes are among the estimated 200,000 young people living with the disease in the United States. Each year, roughly 40,000 people are newly diagnosed with the disease. A diagnosis is challenging, especially for kids with type 1, but many are thriving and living inspirational lives.
Diabetes Self-Management and JDRF have a shared vision: to promote the advancement of type 1 diabetes research by spotlighting the dedicated sugar type 1 diabetes champions from across the U.S. In this series, we asked some young patients about friends, new tech, friends, advice and more.
Emerson Shaffer, 11, Inwood, West Virginia
How old were you when diagnosed with type 1 diabetes?
I was 8 years old when I was diagnosed. I am now in year three of living with type 1 diabetes, living because it is not something that someone considers as life threatening as those children living with cancer, but it does disrupt some of my daily activities. I was 8, on the football field training for the upcoming season, when my mom, who had been watching me lose weight for months, drinking more fluids, eating less, and noticed unexplained fatigue from a normally very active kid. The next day, during a physical for football, my mother’s intuition was right and I was sent to Children’s Hospital in Fairfax, Virginia: the diagnosis was type 1 diabetes. Since that day I learned that type 1 diabetes doesn’t control me, I control it I can still play sports, have cake at a birthday party, and enjoy all the things I did, but I do them differently. In one day, prior to getting my CGM I could prick my finger over 20 times, until my insulin pump comes, I can have up to five shots a day. At school, I not only manage my academics, but constantly have to wonder, “Am I high, am I low?” which can affect my concentration.
What is the hardest part about managing type 1 diabetes? And how do you turn these challenges into positives?
It is not like anything else. For high blood pressure you take a pill with the exact amount you need. For me, I can have a low blood sugar for no reason, or can eat the same exact food every day for a week and then all of the sudden my sugar is high. When I am sick I have to check for ketones. When I am well, I have to watch calories, carbs, and how my body responds to my favorite foods, like pizza and pasta. The positives are that I know that this is treatable, that I am still me, just a little different, and that through this journey I have so much support, from the JDRF community, my parents, grandparents, friends, teachers. It is mine, but I can share the stress with the people I care about most!
How did you become involved with the JDRF?
My mom started looking at how we could connect with other people affected. The first step was my first JDRF walk. Then it just grew, I served as a mentor this year to another kid at school who was recently diagnosed.
Any JDRF community service projects or initiatives?
Since Children’s Congress, I have felt empowered to tell my story, and I know now how important it is for us to maintain the raising of money to support type 1 diabetes research.
How do your friends and family support you?
They are just there. My parents know when I am cranky sometimes it is just because I get overwhelmed. My friends don’t treat me any differently, they get it.
What are some of your favorite activities?
Lacrosse. I love all sports, but feel the best when I am in the Cage and supporting my team. I also love being a part of the church youth group that I go to with my cousin.
What is your favorite diabetes-friendly meal and why?
For my low carb snacks I love to eat nuts. But my favorite dinner is steak (preferably my Pa Pa’s filet mignon) with a small potato, or corn on the cob, a salad and broccoli.
What advice would you give to someone your age who is newly diagnosed with type 1 diabetes?
It is going to be hard at first, it is okay to be mad that this happened to you, but learn all you can and know that you are still the same as your friends, but you have to do things a little different sometimes.
Want to learn more about caring for a child with type 1 diabetes? Read “Top 10 Tips for Better Blood Glucose Control,” “Writing a Section 504 Plan for Diabetes” and “Be Aware of Hypoglycemia Unawareness.”