Teens with Type 1 diabetes share experiences in group run by UB medical students

BUFFALO, N.Y. – Adolescence is stressful enough.  But going through it with a chronic disease that requires multiple daily injections and finger pricks, as well as a fair amount of mental math, is asking a lot of the average teen.

Many teens are dealing with the disease: in Western New York, 100 new cases of Type 1 diabetes are diagnosed on average every year.

Some are benefiting from D-Link, a support group for Type 1 diabetic teens, which was founded in 2006 by students in the University at Buffalo School of Medicine and Biomedical Sciences.

The disease can be very isolating, says Jim Schuler, a UB Honors College senior and a Newfane native, who starts medical school at UB in September. Schuler, who has participated in triathlons and who calls himself “an endurance sports enthusiast,” doesn’t mince words about going through adolescence with diabetes. “It sucks,” he says, grinning nonetheless. “It can be grinding, it doesn’t go away.”

He notes that even family members can’t relate to a diabetic the way that others who have the disease can.

“I could tell a relative that my blood sugar was through the roof this morning, but they don’t really know what that means,” he says. “But if I tell someone who has diabetes, they know exactly what it means, physically. That’s what D-Link offers: it lets you know there are other people out there who have gone through it and who can help you through it, so your isolation doesn’t get you down.”

Schuler, who started attending D-Link in 2009, is now a facilitator, helping UB medical students run the meetings that deal with all aspects of life with diabetes and adolescence.

“While most teens were diagnosed when they were younger, the developmental complexities of adolescence may change the way they deal with their disease,” says Lucy Mastrandrea, MD, PhD, associate professor of pediatrics at the UB and attending physician in endocrinology at Women & Children’s Hospital of Buffalo. “They may pay less attention to figuring out how much insulin they need based on the carbohydrates they ate. Sometimes, they really do not want to have to deal with the disease and how different diabetes makes them from their peers.”

 “Being a teen is stressful enough,” agrees Ellyn Smith, a fourth-year UB medical student and Jamestown native, now a senior facilitator with D-Link. “It’s nice that these teens with Type 1 diabetes have an environment where they can talk about what it’s like with each other.”

D-Link holds meetings twice a month at locations around Western New York.  It is open to any Type 1 diabetic, aged 12 to 20, in any of the eight counties of Western New York. The group also hosts regular field trips to sports events and organizes recreational outings for members and their friends.

Most of those who attend are cared for at the Women & Children’s Hospital Diabetes Center, the only tertiary care center for children with diabetes in Western New York.

The group helps UB’s medical students better understand what having a chronic disease is like, especially for a teenager. The medical students are expected to keep up with research in Type 1 diabetes, and they hold regular journal club meetings.

D-Link also holds an annual research presentation and dinner for members and their families with an endocrinologist who discusses new advances in treatments for Type 1 diabetes.

“It’s really inspiring what these medical students do in running the group and also how the members themselves help each other out,” says Mastrandrea, the group’s faculty advisor. “From the first year the students arrive at medical school, they really are doing much more than sitting in a classroom. They’re doing a great service for our community.”

Topics for upcoming meetings are: "Diabetes and Your Sibling" on April 2 (attendees are encouraged to bring their siblings) and “Get Togethers with Friends: The Challenge of Snacking" on April 23. Meetings are held from 7 - 8 p.m. at the Audubon Library, 350 John James Audubon Parkway, Amherst.

For more information on D-Link or to become a member, contact Jim Schuler and the other facilitators at dlinkfacilitators@gmail.com or ask for information about D-Link at the Women & Children’s Hospital of Buffalo Diabetes-Endocrine Clinic, 716-878-7262.