Lindsay Stearns was 13 when she learned she had Type 1 diabetes. All at once, she was plunged into a never-ending routine of checking blood sugar, calculating insulin doses, planning what to eat and when to eat it, and coping with the consequences whenever she upset the delicate balance.
She didn't like the rules and rituals that diabetes demanded, but her parents insisted. "They were on my back about it all the time, making sure I checked my blood sugar and kept doctors appointments," Stearns says.
With her parents' vigilance, she figured all was well.
"I wasn't worried. I knew I would be okay," Stearns says.
Then she moved to Tampa to attend college.
"That's when I really lost sight of my health and rarely checked my blood sugar," says Stearns, now 27. "For 2 ½ years, I just didn't care at all."
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There's nothing unusual about young adults ditching their parents' rules when they leave home. But for those with a chronic disease like diabetes, the fallout can be particularly serious.
"When I see college students over their Christmas and summer breaks, most have deteriorated dramatically," says Dr. Frank Diamond, professor of pediatrics at USF Health in the division of pediatric endocrinology and diabetes. He attributes it to a new lifestyle of late nights, erratic eating, drinking alcohol, and keeping up with class work.
"They've got to try to find out where diabetes management fits in to all of this,'' he says. "It isn't easy."
Many young diabetics don't want to draw attention to their condition, so they stay quiet about it, although having people who know how to help them in an emergency is essential.
Add to that a newer issue: Some diabetics feel stigmatized because of their disease, says Joanne Feeney, special events director at the Tampa office of the American Diabetes Association. So much attention has been paid to the increase in Type 2 diabetes, which is associated with obesity and inactivity, she says there's a misconception that all diabetics would be fine if only they had more discipline.
The truth is that Type 1 and Type 2 are very different diseases (see box), but neither of them can be controlled through willpower, say Diamond and Feeney.
Even the most diligent patients can have their blood sugar get out of balance, making it all the more important that friends and colleagues know how to help.
Still, Feeney says, "I have heard from many people who say they don't want anyone to know they have it, because people think it's their fault and the diabetes could have been prevented.''
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Dr. Laura Williams, a clinical psychologist at the USF Health Diabetes Center, says the students who do best have worked out a plan to gradually hand over responsibility for diabetes management from parent to student.
"We talk about it as a transition process," says Williams, a Type 1 diabetic. "A young adult may be very good at checking blood sugar, but may not know much about making and keeping medical appointments and handling health insurance issues,'' and might need more parental help in those areas.
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More than two years with poor blood sugar control took a toll on Stearns. She felt sick all the time, had difficulty concentrating, became depressed and lost a considerable amount of weight. She felt her boyfriend couldn't understand her struggles; ultimately they split up.
When she decided she'd had enough of all that, she found a sympathetic doctor who pledged to help her get back on track. Within six months she was a candidate for an insulin pump, which simplified her diabetes management.
Today, she's associate manager of the ADA's Step Out Walk to Fight Diabetes, the group's major annual fundraiser. She says she talks with young patients and their parents every chance she gets.
"Being able to tell someone you can live a normal, healthy, active life with diabetes is amazing."