Diabetes often is thought of as a disease of aging and lifestyle, and rates of type 2 diabetes have skyrocketed as the nation gets older and larger.
But most of the roughly 193,000 Americans under age 20 who have diabetes have type 1, an autoimmune condition in which the body makes no insulin at all. The struggle to avoid dangerously high or low blood sugars, never easy, can become even tougher when a young person leaves home — and parental vigilance. A recent study found that diabetes distress — which is different from regular stress and anxiety — can be especially pronounced among college students.
“Many young patients have great support at home,” said Kenneth Rodenheiser, a certified diabetes educator in the division of endocrinology/diabetes at the Children’s Hospital of Philadelphia. “In college, they’re asked to take control of their diabetes at the same time they’re learning to live on their own.”
But Temple University sophomore Yoni Gilad, 19, said it’s entirely possible to manage type 1 on your own — with support and preparation.
Three years ago, Gilad, a championship rower from Horsham, was diagnosed with type 1 when he arrived at CHOP with a blood sugar of 900 — nine times the normal level.
Although the diagnosis surprised the student-athlete, he quickly decided that diabetes “was not going to prevent me from doing anything — rowing, making friends, doing well in school, or having fun.”
“I came to Temple after having talked to my doctors about my concerns and questions on college life,” Gilad said. “I made sure I had all my supplies and that my roommate, my teammates, and all my coaches knew what I had, how I managed it, and what to do if something went wrong.”
Gilad’s strategy paid off: During his first year, he experienced a single episode of very low blood sugar. After a few days of not feeling well, he sensed his blood sugar dipping during rowing practice, and although he ate three packs of gummies that each equaled 45 grams of carbohydrates, his numbers refused to rise.
When Gilad returned to shore, he discovered his blood sugar had plummeted to 30.
“There were times when the alarm on my glucose monitor went off in the middle of the night — I’m a heavy sleeper — so my roommate had to wake up and throw something at me and say, ‘Wake up, your blood sugar is going really low,’” he said. “But I never went so low that I couldn’t help myself.”
Rodenheiser approves of how Gilad embraces his diabetes and his willingness to educate others about his disease.
“The more people you tell, the more comfortable you feel about telling people,” Rodenheiser said. “It means that more people are watching out for you, that someone who has eyes on you might say, ‘Hey, you’re not looking so well.’”
It’s a good idea for young patients to practice taking the lead on diabetes care well before they leave home, he said.
“Since we’re not going to ask kids to text their moms every time they put something in their mouths, summer can be a good time to practice taking charge of your own care,” Rodenheiser said. “While you’re still home with Mom and Dad, talk to them about any challenges you have with your care or share where you may have messed up.”
At college, type 1 students also need to track carbohydrate counts of cafeteria meals, remember to count carbs in late-night pizzas, and be hyper-aware of how drinking alcohol can affect blood sugar.
Although neither Rodenheiser nor CHOP endorses underage drinking, he strongly believes that patients must understand how alcohol can first raise and then depress blood sugars, sometimes for hours afterward. Patients who do indulge need to watch their sugars carefully.
Parents of children with type 1 may also find the transition to college challenging, Rodenheiser said.
“My biggest worry was his safety,” said Debbi Gilad, 53, who works as a system director for Bon Secours Mercy Health. “By giving up control, would his day-to-day support system keep him as safe as the support I gave him?”
She also worried about whether his new “support team” of friends, roommates, and coaches could adequately step up in an emergency.
Still, the family wanted their son to enjoy the freedom of college and worked hard to prepare him for the transition, including “teaching him to drink alcohol during a trip to Paris,” she said.
To ensure that she “did not drive Yoni crazy or panic if he ran high or low and couldn’t get in touch with him,” his mother stopped following his blood sugar readings on the CGM (continuous glucose monitor) app on her smartphone, and handed the job to his cooler-headed father. They agreed on a two-word code that Yoni could text to assure them everything was fine.
And while the day-to-day management responsibility for his disease was shouldered by Gilad, his mother “retained responsibility over his prescriptions — insulin, pump Omnipods, and Dexcom CGM supplies. I felt that if I could make one thing easier for him, it would be handling the prescriptions, vendors, and insurance.”
So far, their system has worked.
“They might text about trending highs or lows or if the Dexcom is on or not, but they really let me be independent,” said Gilad.
For parents facing this transition, the College Diabetes Network offers two booklets on its website: “Off to College with Diabetes” and “Off to College for Caregivers.” The publications offer tips on topics ranging from how to manage sick days, dealing with diabetes burnout, and drinking with diabetes.
Gilad, who placed second in the Men’s Freshman Eight during the 2019 Dad Vail Regatta, encourages new college students with diabetes to make health a top priority.
“There’s a lot going on in college, especially freshman year,” he said. “You don’t want to make it worse by not taking care of yourself.”
For young type 1 patients leaving home for the first time, Rodenheiser offers a checklist: