The day Yale senior Gabriel Betancur took the MCAT, the eight-hour medical school admission test, the sensor he wears taped to his arm to track his blood sugar levels sent data to his cellphone that showed his blood sugar was rising.
As anyone with type 1 diabetes knows, high blood sugar causes symptoms, including fatigue, thirst, and frequent urination.
“I powered through it,” says Betancur, adding that he might not advise someone else to try the same thing. “Maybe I should have taken the test on another day, but it all worked out.” Betancur passed the exam and was accepted at Yale School of Medicine; his dream is to become a pediatric endocrinologist.
It was a tough day, but nobody said higher education would be easy with type 1 diabetes. “We know, looking at the data, that achieving targeted glycemic control is difficult for many teens and young adults, and it’s a problem that can affect health long-term,” says Jennifer Sherr, MD, PhD, a Yale Medicine pediatric endocrinologist who is Betancur’s doctor and has type 1 diabetes herself. “Many studies are focused on how to improve care for this age group, in particular.”
Achieving targeted glycemic control is critical to prevent such long-term complications as cardiovascular disease, kidney disease, and retinopathy. Children up to age 18 are advised to target an A1c level (a 3-month measurement to estimate the average level of blood sugar) of < 7.5, and that should decrease to about 7 in adulthood.
Yet, the data from the Type 1 Diabetes Exchange Clinic Registry, a consortium of over 80 centers across the United States, shows that the average A1c in young people with diabetes (ages 13 to 26) is about 9, putting these teenagers and young adults at risk for complications later in life.
Betancur says it was a shock for his family when he developed severe stomach problems at the age of 4 and was diagnosed with type 1 diabetes. With this condition, the immune system mistakenly destroys the cells in the pancreas that produce insulin, the hormone that regulates glucose, or blood sugar. (This is different than type 2 diabetes, which is typically diagnosed in middle-aged or older people whose bodies don’t metabolize insulin properly.) Blood sugar is vital because it gives the body energy.
Managing diabetes on their own
Because management of the disease is critical, it’s that much more complicated for students going off to college, who are away from their parents, the comforts of home, and even their doctors.
College students with type 1 diabetes must be prepared for their new environment, says Dr. Sherr: “They need equipment and supplies for injecting or pumping insulin. A refrigerator for storing it is mandatory, as are such items as juice boxes, glucose tablets, granola bars, and maybe some kid-sized candies for a boost when their blood sugar is low.”
Once college students are settled on campus, new triggers can drive their blood sugar levels too high or too low, putting them at risk for complications. They are faced with new eating and exercise routines, sleepless nights, late parties where alcohol is abundant, and a newfound sense of independence. “During adolescence, there may be a tendency to feel immortal,” says pediatric endocrinologist Ania Jastreboff, MD, PhD.
Betancur, who was an undergraduate at Yale, thinks he managed the disease well in college, probably because he doesn’t remember life without it. But there were difficult times. “When you’re sleeping and don’t know your sugar is low, then you wake up, your heart is beating fast and you’re sweating—you think you are dying,” he says. Unlike at home, where his parents would go into his room and check his blood sugar while he was asleep, he was suddenly on his own.
Providers at the Yale Medicine Pediatric Diabetes Program at Yale New Haven Children’s Hospital schedule office visits for college-bound patients in the spring and again in August. Each May, they host a College Day for freshmen, their parents, and older peers like Betancur.
Participants submit questions anonymously: What if a roommate consumes all the snacks put aside in case of a hypoglycemic episode? (They could protect their food with a lock.) What if low blood sugar makes them feel sick during a final exam? (They should be aware of their rights under the American Disabilities Act, which includes the right to reschedule.)
“Our overall mantra is ‘be prepared,’” says Kate Weyman, an APRN and diabetes educator who coordinates College Day. “Know what you’re going to need, know your insulin doses and insulin pump failure plan, carry backup insulin and pump supplies, as well as something to treat low blood sugar at all times. You’re going to be OK, but you have to be prepared and responsible.”
Road map for entering college with diabetes
If young adults like Betancur and their doctors were to provide a road map for college, what would it include?
- Prepare before you go. Visit your doctor in the months prior to school starting (May-August) to discuss a diabetes management plan and get a doctor’s note to take to school. Read up on your rights under the Americans with Disabilities Act and register with the disabilities/auxiliary services office at your school. Find out ahead of time if the college has a chapter of the College Diabetes Network, a nonprofit organization, or some type of peer support group.
If you have an opportunity to communicate with roommates, tell them that you have diabetes and explain what that means. Stock up on supplies and backup supplies, and find a pharmacy near campus that you can use. Have medical alert jewelry or a wallet card (some people with diabetes even get medical alert tattoos) so that, if you are in an emergency, people will know you have diabetes. Use the health app on your phone to set up a medical ID, which can be displayed on the phone’s lockscreen and make it possible to make calls to certain numbers identified as contacts in case of emergencies.
- Tell new friends about diabetes. Tell roommates, friends, professors—you want them to know about your disease. They should know that it’s important to get help if they notice problems, like the confusion or even vomiting that can occur if your blood sugar is off track. “I was extremely open about my diabetes in college, often just doing a basic diabetes management task in front of others, which opened the door to conversation,” says Dr. Sherr. “The kids that I worry about most are the ones who feel like diabetes is something they can’t discuss.”
While some students are more private, Weyman had a patient who told her, “My parents totally took that over.” The parents told their child’s roommate, “He’s not going to tell you, so we’re going to tell you,” Weyman recounts. “In the end, he was actually grateful they did it. He thought it made them look a little overbearing, but that was OK because it took the focus off of him.”
- Use a pump and a sensor to manage insulin. People with type 1 diabetes can choose how to manage their condition and method of insulin delivery. Dr. Sherr thinks tech-savvy generations will prefer a pump and a sensor system—the latter checks blood sugar levels throughout the day and can send the information to your cell phone, allowing you to track trends, which you can adjust by injecting or pumping insulin. (Yale has participated in clinical trials to study a technology known as the “artificial pancreas” that may eventually be used to adjust levels automatically.)
“If you can use the sensor to see how walking 20,000 steps in one day leads to a lower glucose number, you know how to change things the next day. But without that information, you are flying a little blind,” Dr. Sherr notes. Betancur says he was reluctant to use a sensor and pump, but it turned out to be Dr. Sherr’s best advice for him. “Everybody is different. But my insulin levels are so much better and my quality of life has improved because of the sensor and pump,” he says.
- Take care of yourself. Diet, exercise, and sleep are extremely important, as are behavioral and mental health, says Elizabeth Doyle, APRN. Doyle has contributed to studies that look at the psychological health of young people with diabetes and says many would benefit from routine psychological screening. This could help caregivers detect more cases of depression and diabetes distress (an emotional state that overlaps with anxiety, depression, and stress).
They may be able to detect an eating disorder called diabulimia, where a person with diabetes takes less insulin than is necessary to lose calories through urine. “For those with diabetes,” says Doyle, “it can lead to an acute life-threatening episode of diabetic ketoacidosis and cause their overall diabetes control to get worse.”
- Be cautious about drinking. Alcohol can be a major challenge for college students with diabetes, says Dr. Sherr. Alcohol has carbohydrates, so beer, wine, and hard liquor can drive blood sugar up. Adjusting insulin doses in response can be tricky, because as the liver processes the carbs, blood sugar starts coming back down (especially dangerous if the party is over and you are back in the dorm sleeping). “It’s a very fine balance,” Dr. Sherr says. Doctors suggest planning ahead for situations that involve drinking. “Get good at using technology to watch your trends and learn how to manage them,” Dr. Sherr says, “and make sure someone with you knows you have diabetes.”
- Think about how to talk to family members. A helpful tip is to set a time to talk about diabetes so that it isn’t part of every conversation you have. “You really want to talk about your college experience, not just the diabetes,” Dr. Sherr says.
Of course, parents worry, and some parents may be remotely monitoring their child’s blood sugar, having access to all of the potential fluctuations, highs, and lows that may be occurring, Weyman says. “So, it’s good to agree on how you will handle this information before leaving for college. For example, you can agree that if you have high blood sugar, your parents can’t call you right away—they have to wait two hours,” she suggests. “Or the student can text their parents to say, ‘I know. I’ve taken care of it.’”
All of this can be difficult when teenagers find themselves in the new world of college after years of meticulous management, Dr. Sherr says. “For a lot of families, I think both the kids and the parents get diabetes burnout. They think this has been going on for too long. I would say families that stay invested—but that aren’t accusatory or judgmental in their tactics—tend to have more success.”
A turning point in diabetes management after graduation
There is light at the end of the tunnel, and it typically arrives at age 25 or 26—certainly by age 28, when insulin levels start leveling out, according to the Type 1 Diabetes Exchange Clinic Registry data.
Weyman, who helps young adults transition to adult care in a Type 1 Diabetes Bridge Transition Clinic, notes, “In my experience, for many patients after college something seems to click, where they realize they feel better if they do the things that help their blood sugar—as opposed to when they eat Lucky Charms and they don’t feel well,” she says.
One of Dr. Jastreboff’s patients is Michelle Slavin, who was diagnosed at age 13 and is now 29 and a nurse practitioner. She was determined not to let the disease hold her back in college. “I checked my blood sugar way more than is common. I’d have glucose tabs in my purse and ask friends to carry glucose tabs as well,” she says.
But toward the end of college, she was grappling with weight gain and subsequent disordered eating patterns, and she was angry—at diabetes.
Her nurse practitioner asked her to pick one thing she’d like to change about her disease. Slavin replied, “I wish I could exercise more.” After further discussion, she and her caregivers worked out a realistic plan that would reduce her hyperglycemia, giving her more freedom to be active. She has since run a half-marathon, a 10-mile race, and several 5Ks, and competes in Brazilian jujitsu.
“I think the most important thing for emerging young adults to know is that diabetes does not define them. That’s a critical point. They get to define who they are as individuals,” Dr. Jastreboff says.