Some time ago I interviewed the mother of a teenage daughter with type 1 diabetes. We talked about her child's treatment, new technologies and the search for a cure. Then she told me what was really on her mind: her daughter wanted to fit in at school; load up on french fries and ice cream, and stop taking her insulin. Teens and diabetes, in other words, are a volatile mix. And the same is true for other chronic conditions, including asthma, food allergies and HIV. Kids whose parents have monitored their sugar levels or dosed their pills for years must suddenly learn to take charge of their own health when what they really want to do is ditch the meds and hang out with their friends. "Testing the limits is a normal part of adolescence," says Dr. Paul Strumph, chief medical officer of the Juvenile Diabetes Research Foundation. "But they don't understand the long-term consequences."
Those consequences can be dire. Dr. Donna Futterman, of Children's Hospital at Montefiore in New York, saw two 19-year-olds with HIV die this year after they stopped taking their pills. "They're tired of a lifetime of taking them and they're tired of their health being different," she says. Other diseases are less destructive in the short term, giving kids a false sense of security. Strumph has seen teens cut back on daily insulin doses. "They're told, 'You have to take all your insulin,' and they say, 'What happens if I don't?' " says Strumph, 47, who was diagnosed himself at 6 and understands the burden. Studies have found that tighter control over blood-sugar levels and more frequent medication throughout the day can significantly reduce rates of eye, kidney, nerve and heart disease.
Teens often think they're in command when they're not. Researchers at the Cincinnati Children's Hospital Medical Center found that 74 percent of adolescents dramatically overestimate their ability to manage their asthma. "Some kids who were coughing every night thought their asthma was in good control," says study coauthor Dr. Maria Britto. Other studies show that fewer than half of teens with asthma take their medicines regularly. Adolescents with food allergies believe they're doing better than they are, too. Even those with severe peanut allergies are taking huge risks, says Anne Munoz-Furlong, of the Food Allergy & Anaphylaxis Network. They say they're carrying life-saving epinephrine with them at all times, but many leave it home when they're wearing tight clothing or playing sports. And they're gambling on cakes and candy with murky "may contain" labels. "It's like playing Russian roulette," says Munoz-Furlong.
How to tackle the problem? Acknowledge teenagers' sense of autonomy, don't judge them and communicate honestly, says Futterman. If a teen is sick of taking multiple meds, Futterman might see if there's one drug that can be safely stopped temporarily under strict supervision. Britto says it's critical to let teens take charge. After watching her patients text-message, she launched a small pilot study to see if electronic reminders could help them manage their asthma. The program, still underway, allows adolescents to create their own text messages (one example: "take ur damn meds") and decide how often and when they want to receive them.
Alexa Painter, diagnosed with type 1 diabetes at the age of 2, is on top of her disease. Now 18, Painter eats nutritious foods, checks her blood sugar regularly and receives insulin through a small pump. Diabetes isn't always easy. "I do get tired of it sometimes, but I suck it up and get over it," she says. Last week, Painter started college. She'd like to be a nurse practitioner and a diabetes educator. Good news for the next generation of teens.