Quinn Nystrom

As seen in the St. Paul Pioneer Press on January 27, 2012.

At age 13, Quinn Nystrom was already well versed on diabetes, her younger brother Will having been diagnosed with Type I at age 5. When she learned she would share his fate for their lifetimes — or until there is a cure — she felt shocked and ashamed.
As a teenager diagnosed with a chronic and incurable disease, Nystrom had many questions that went beyond how she would manage it. Would she be able to have children? When should she reveal it to a prospective boyfriend?

Grasping the potential complications of her disease — she could go into a coma overnight or pass out in public if she didn’t monitor her insulin — was frightening enough. But it was the reaction of others that really threw her. When her senior prom date asked whether her illness was contagious (like AIDS) she realized how ill informed people could be. Thirteen years after her diagnosis, she’s still amazed by things others say. People question whether she “should eat that cookie”; express confusion that as a size 10 she has a disease that afflicts the obese; and marvel that her teeth aren’t bad, she said.

It’s hardly a rare condition. Nystrom is one of nearly 300,000 Minnesotans, 25 million Americans and 285 million worldwide who suffer from it. In addition, millions more are reportedly either undiagnosed or in a pre-diabetes stage.

According to the Mayo Clinic, “Type 1 diabetes, once known as juvenile diabetes or insulin-dependent diabetes, is a chronic condition in which the pancreas produces little or no insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy. Type 2 diabetes, which is far more common, occurs when the body becomes resistant to the effects of insulin or doesn’t make enough insulin.”

Type 2 typically afflicts adults, but is becoming more common in children. Mayo Clinic advises, “There’s plenty you can do to help manage or prevent type 2 diabetes in children. Encourage your child to eat healthy foods, get plenty of physical activity and maintain a healthy weight. If diet and exercise aren’t enough to control type 2 diabetes in children, oral medication or insulin treatment may be needed.”

It’s a costly disease on both a personal and global level. Not only must diabetics manage their diets, exercise and insulin levels, they also have reduced life expectancy and face significant medical complications. Patients are more likely to experience high blood pressure, heart attack, stroke, kidney failure, blindness, nerve damage and amputations than those without the disease. Diabetes costs Minnesotans $2 billion annually for medical care, disability, lost work and premature death and accounts for more than 30 percent of all Medicare expenditures.

“It’s a scary illness with scary consequences. As a young girl I felt invincible to those consequences,” Nystrom said. To give her a reality check, her parents forced her to go to Camp Needlepoint, the American Diabetes Association Camp in Hudson, Wis. There she met peers who shared her struggles and their coping strategies and gave her needed perspective. “Camp helped me to see I could still have a piece of cake, still go horse back riding, and attend a slumber party,” she said.

Her brother Will also showed her there can be life with diabetes, she said. “My brother played hockey so I could still figure-skate. He played football so I could play tennis.” Will was also teased a lot but that didn’t stop him – and it inspired her.

She decided that while she couldn’t control the diagnosis, she could control her reaction. In March 2002, she was selected as the National Youth Advocate for the American Diabetes Association (ADA). She traveled to children’s camps, convention halls, Congress and the White House, sharing her story with thousands.

Ten years later, the Minneapolis resident is sharing her story as a professional speaker and writer (www.quinnnystrom.com). Soon she will publish a book titled “If I Kiss You Will I Get Diabetes?” She wants to help kids like the one who asked, “Can a girl with diabetes get a boyfriend?” come to terms with the diagnosis more easily than she did. You can accept the physical parts of the disease —- checking blood sugar, giving yourself a shot, she explained. “The book is about how you mentally accept that you have diabetes.”

The issue is very much on the radar of Minnesota’s medical community. In October 2010, Mayo Clinic and University of Minnesota established “Decade of Discovery,” a collaborative effort to “optimally treat and ultimately cure Type 1 and Type 2 diabetes.” The partnership draws upon Mayo’s expertise in endocrinology and the University’s investment in the science of regeneration.

Projects involving both laboratory and patient-based research will focus on developing a specialized electronic chip that would improve glucose monitoring and help make an artificial pancreas possible; developing an anti-obesity drug; and targeting insulin-specific T cells as a cure for Type 1 diabetes.

Within the next two years, researchers hope to test an artificial pancreas on humans. While not a cure, it could be life-changing for Will Nystrom, who gives himself insulin injections six to eight times per day, and his older sister, who wears an insulin pump every minute of every day.