Feb 15, 2024, 9:27:01 PM CST Feb 19, 2024, 10:18:30 AM CST

Rob's story: Former patient makes T1D advocacy his life's work

When then 16-year-old Rob was diagnosed with type 1 diabetes, he met the Children’s Health physician who would cheer him on from the sidelines as he ran toward his goals.

Man smiling for picture who has type 1 diabetes. Man smiling for picture who has type 1 diabetes.

At age 35, Rob, who lives with type 1 diabetes (T1D), still sees himself as a Childrens Health℠ patient. He credits Childrens Health as one of the most essential players in the success of his health.

"Childrens Health set me up for a lifetime of success in managing my diabetes. From the day I was diagnosed, the message I heard was that any dream that I had for my life was still within reach as long as I took care of my diabetes," Rob says.

Robs game plan requires a new strategy

When Rob was 16, his entire focus was on earning top grades and playing college basketball. But on January 1, 2005, life passed him a new opponent – T1D.

Young man participating in basketball game.Rob and his parents arrived at the Childrens Health Emergency Room following a trip to the urgent care clinic where, after listening to Robs symptoms and testing his blood sugar, a doctor told the family to get to Childrens Health quickly.

"I spent the night before going back and forth from my bedroom to the bathroom. I counted 27 trips and I was unusually thirsty," Rob says.

In the emergency room, Robs blood sugar reading was 450 milligrams per deciliter, which is far higher than the normal range of 80-130 milligrams per deciliter. Rob later learned that what he was experiencing were many of the most common symptoms of pediatric hyperglycemia (high blood sugar).

Immediately after Rob was given insulin through an IV he started feeling better.

"I told the nurse the good news: what they gave me was working, so I was good to go. She smiled and told me – ‘not so fast, we have a lot to cover. I had no idea what the diagnosis meant," he says.

Meeting his diabetes coach

Rob stayed in the hospital for two days and soon met Soumya Adhikari, M.D., a pediatric endocrinologist at Childrens Health and Associate Professor at UT Southwestern .

Doctor and patient posing for a picture.
Dr. Soumya Adhikari (left) and Rob (right)

"With many diseases, a doctor's goal is to treat a patient so they get better. But with T1D, our primary role is to be the patient's teacher. We are their resource to learn about their body and all the considerations they need to take in managing their diabetes in everyday life," Dr. Adhikari says.

T1D happens when a persons immune system attacks the pancreas and destroys insulin-producing cells. Without insulin, sugar builds up in the blood and the bodys cells arent getting the food (energy) they need to keep working. When this happens, T1D patients are at risk of diabetic ketoacidosis (DKA), which can interfere with essential body functions and lead to serious complications.

Because T1D is a lifelong disease, patients have to check their blood sugar multiple times a day and be prepared to give themselves insulin injections.

Right away, Dr. Adhikari knew that Rob would be a patient who excelled at managing his diabetes.

"He was actually one of the more prominent patients in my own development as a physician. Rob helped me see even more clearly that each patient is going to demand different things from me. Rob was determined to not let diabetes get in the way of his goals," Dr. Adhikari says. "I knew that if I was going to serve any purpose at all, I needed to be prepared to help him continue to live his very active life."

Making diabetes part of his daily practice

Rob soon realized what the nurse meant by having a lot to cover. Through the Pediatric Diabetes Program, part of the larger Endocrinology Program, Rob first learned how to test his blood sugar and calculate how much insulin to give himself. Those basics led to a new knowledge base in understanding why counting the carbohydrates in his food, and how staying hydrated is important for helping his body absorb the insulin he gives himself.

"Everything I do in life is factored into my blood sugar level. How much do I exercise? How much do I sleep? I had a lot of questions and Dr. Adhikari was always ready with an answer," Rob says.

Man speaking during basketball session.Like many kids, Rob remembers the first few months of living with T1D were a bit of a rollercoaster. For the first three years, Rob tested his blood sugar multiple times a day and gave himself insulin injections. Then in 2008, Rob got an insulin pump.

"I got the insulin pump when I was in college, so I wasnt a Childrens Health patient anymore. But everything I learned from Dr. Adhikari was with me every day of my college basketball career." Rob says. "One of the biggest things I learned wasnt necessarily medical – it was how to confidently advocate for myself."

A few years later, technology advanced again and Rob started using a continuous glucose monitor, which monitors his blood sugar in real-time.

"Technology has changed so much since I first arrived at Childrens Health. Theres so much I dont have to do now because an incredible amount of research has been done to give us better resources to measure our blood sugar and track our overall health," Rob says.

Rob builds a community team

Now, 19 years after arriving in the Emergency Department and meeting Dr. Adhikari, Rob has made the hospitals mission, to make life better for children, his own.

In 2015, he launched Diabetics Doing Things, a podcast about the different facets of life with diabetes.

"The podcast focuses on empowering people and creators who live with diabetes by helping them stay informed. The stories we hear from guests are inspiring. We also host events and try to do what we can to build a strong diabetes community," Rob says.

Through the podcast, hes built a partnership with the North Texas Food Bank to help ensure food-insecure people with diabetes can access the nutrition they need.

Alongside his mentor, Dr. Adhikari, Rob also sits on the board of the Dallas Chapter of JDRF.

"Seeing Rob become an advocate for kids, and helping others understand the volume of pressure that a child with diabetes lives with, that other kids dont – hes filling an important need in the community," Dr. Adhikari says. "Im just glad to stand beside him as an adult and watch his impact have such a far reach."

Having talked to thousands of kids, teens and young adults about their T1D, Rob has landed on one clear message he wants everyone to carry with them.

"I want every kid with T1D to know – yes you are a person with diabetes, but you are also a person who needs rest, friendships, time to have fun and enjoy time with friends and family, including food. You deserve to have the confidence to achieve your goals," Rob says. "Because I had such great support at Childrens Health, I'm a healthy adult and there are thousands of people living their healthiest life thanks to this care team."

Learn more

Ranked as one of the best pediatric diabetes programs in the country, Children's Health provides expert personalized care for every type 1 diabetes patient. Our team is ready to help with all aspects of diabetes education, mental health and diet. Learn more about our Pediatric Diabetes Program.

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