Brooke Miller, a college freshman at the University of Florida, was diagnosed with Type 1 diabetes at age 3.
“I don’t really remember my life without it because I was so young,” says the 18-year-old.
Her earliest memories are of feeling tired at school and her mother coming to give her insulin injections. She also remembers sitting on the kitchen floor at her Weston home trying to prick her finger to check her blood-sugar levels. “I wanted to be independent and do it on my own.”
Over the last 10 years, however, new technology such as the continuous glucose monitor (CGM) and insulin pump have been introduced and are becoming more sophisticated, allowing patients such as Miller more freedom and power over managing their condition.
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When Miller started using a CGM four years ago, providing her with a 24-7 reading of her glucose levels, she went from having to prick her finger six to seven times a day to calibrating the device and pricking her finger only two to three times per day. The CGM communicates with an insulin pump, which maintains the body’s glucose levels.
In Type 1 diabetes, the body’s immune system attacks part of the pancreas, destroying insulin-producing cells called islets. This leads to either no insulin produced or a severe shortage of the valuable hormone. It also results in dangerously high blood sugar levels, which can damage eyes, kidneys, nerves and the heart, and can lead to diabetic coma. The condition is treated by taking insulin and constantly monitoring blood sugar levels.
The insulin calculation is different for every patient and is established early in treatment through trial and error.
“For instance, if someone eats 60 grams of carbohydrates, they may need one unit of insulin for every 15 grams,” said Dr. Rodolfo Alejandro, director of the Clinical Cell Transplant Program at the Diabetes Research Institute at the University of Miami Miller School of Medicine. Counting carbohydrates is a critical part of managing Type 1 diabetes, but it’s not a perfect science. Other factors, such as stress, hormones and general health, also affect insulin production.
“Every single day is different with diabetes,” says Miller. “You never know what you’re going to get. I eat different things every day. It’s honestly a balancing act. I literally have to be my own pancreas. I always have to give myself insulin. I always have to test my blood sugar. It’s a lot of added responsibility, especially when I have tests to study for and I’m in the library all day.”
For Uchi Botero, it was the summer of 2012 when she noticed something wasn’t right with her 7-year-old daughter Tatiana.
“She was overheated and thirsty. She constantly needed water and to go to the bathroom. Her skin was dry. She was tired all the time,” Botero recalls. “You know, Type 1 is a hidden disease. It’s hard to diagnose because the symptoms are so common. But all of these things happening at the same time, it didn’t seem normal.”
Her family had a trip to Europe planned, so she pushed to get Tatiana to the doctor. She remembers seeing the doctor blanch when looking at Tatiana’s urine test results. An endocrinologist soon confirmed her worst fears: Tatiana had Type 1 diabetes.
“There are no words to express how a mother feels having a kid with a disease that you usually relate to people who are older,” Botero said. “She would be insulin dependent from that moment on, even with the healthiest food. I was afraid she’d lose the spontaneity of childhood. It was very, very hard in the beginning. I fell into a deep, sad depression.”
Today, Tatiana is 13 and has lived with the disease for five years. In many ways, she’s provided her mother with strength in adjusting to their new normal. “Everyone has something,” Tatiana told her mother at age 8. “This is my thing.”
“She never complained. She’s rarely missed a dose. She’s very conscious about her condition. It’s given her a special strength. It’s part of her life, but not who she is,” says Botero.
When it comes to managing your child’s Type 1 diabetes, Botero offers this advice: “Give yourself time to understand and adapt. This is life-changing. Things will get better.”
Give yourself time to understand and adapt. This is life-changing. Things will get better.
Uchi Botero, mother of Tatiana, who was diagnosed with Type 1 diabetes when she was 7
It takes about six months to understand how your child’s body will react to insulin. For Botero, working closely with Dr. Marco Danon, a pediatric endocrinologist affiliated with Nicklaus Children’s and Baptist hospitals, was essential. “He’s kind-hearted and really understands the psychology behind the condition. He told us, ‘The insulin will adapt to Tatiana, not Tatiana to the insulin.’ ”
For Botero, it was also important not to deprive Tatiana of being a kid, so occasionally she can have a sweet treat, like a piece of chocolate cake. It also meant investing in a waterproof insulin pump so she can go swimming.
Deciding which tools to use to manage Type 1 diabetes is different for every patient. “Not everyone likes the pump or can afford it,” says Alejandro. And the pump still requires regular insulin injections.
The Boteros eventually established a routine where Uchi manages Tatiana’s condition in the hours that she’s sleeping and in the morning before she goes to school. “I wanted to take that burden from her,” says Botero.
When Miller left home for college, she was most worried about overnights because her mom would make sure her blood-sugar levels were good while she slept.
“I was really nervous coming to college. After settling in, I feel a lot more acclimated to everything and I’m pretty surprised about how easily I’ve handled it,” she says, reflecting on her first semester away. She communicates with her mom regularly and sends her blood sugar levels via text. They both have access to her continuous glucose monitor’s charts on their phones, and Miller also sets reminders on her phone to manage her treatment plan.
Some of her newfound challenges came with adjusting to longer classes and walking around campus, which sometimes causes her blood sugar levels to drop. “I’ll feel shaky and have no energy or feel weak. It’s hard for me to think. Nothing goes through my brain,” Miller says. To counteract these instances, she’s gotten into the habit of having juice or gummies on hand.
Since she’s eating out more, she’s also become more vigilant about counting carbs and looking up nutritional information of various restaurants online before ordering, so she knows how to adjust her insulin. She makes sure not to waste carbs on sugary drinks, and to exercise a few times a week.
She’s also transparent about her condition with her friends and sorority sisters. “The more people that know about it, the better,” she says, noting her roommate knows how to use her glucose monitor.
NASCAR racer Ryan Reed was 17 when he was diagnosed with Type 1 diabetes. He’d just moved to Charlotte, North Carolina, from his hometown of Bakersfield, California, to start training for race season. “I didn’t feel good. I was thirsty, using the bathroom all the time and losing weight,” he recalls. After a few months away from home, he saw his parents again and they took him to the doctor.
After being diagnosed with Type 1, his biggest question was whether he’d be able to race again. The prognosis from his first doctor was grim, but he began researching professional athletes with Type 1 diabetes and sought out Dr. Anne Peters, a specialist in Beverly Hills who saw a future for him. “It was the first time I viewed diabetes as something other than a dream-ending disease,” says Reed. “She taught me to perform, train and eat like an athlete and to learn how to mentally approach the disease.”
Today at 24, Reed is a championship title-winning NASCAR racer sponsored by Lilly Diabetes. He recently paid a visit to University of Miami’s Diabetes Research Institute to speak with families about managing the disease and pursuing dreams. “I’m really passionate about spreading awareness,” says Reed. “Never in my life did I think I’d be an inspiration in any form. I’m just trying to drive race cars.”
For families living with Type 1 diabetes, the greatest gift they can give their child is a sense of normalcy.
“This is my job,” says Botero. “It’s not a burden as long as Tatiana’s a happy, independent teenager. God works in mysterious ways. It’s amazing that the one thing she can’t produce, we can provide.”