What would you do if you were diagnosed with a chronic, incurable disease?
Quinn Nystrom, social media specialist at Tri-County Health Care, had to answer that question at the age of 13, when she was diagnosed with Type 1 Diabetes.
Type 1 Diabetes occurs when the pancreas completely shuts down and no longer produces insulin, Nystrom explained. Insulin gives the body the ability to process and use sugar (glucose). Without it, blood sugar levels can spike high or drop life-threateningly low.
It is the more severe type of diabetes, as Type 2 occurs when the body builds up resistance to insulin but the pancreas still works.
Experts aren't sure as to the exact cause, but an autoimmune disease is most likely.
No matter the cause, Nystrom has had to learn to take life one day at a time to keep herself alive.
Learning to live
When Nystrom was in fifth grade, her 5-year-old brother Will was diagnosed with Type 1 Diabetes. Before this point, all Nystrom knew of it was what she read in the Babysitter's Club book series, which features a character with the disease.
So when she sat in the same doctor's office and heard the same diagnosis, she was in absolute shock. "I think I was so flabbergasted that I just went into complete denial," she said. "And of course I was fine that Will was diagnosed with it, but now that I was diagnosed, I couldn't grasp it."
From that second onward, her life had to go through a radical change. To manage the disease, people must keep track of blood glucose levels and manually inject insulin to manage the levels, acting in place of the dead pancreas.
"It's a daily disease. It's not you just take a pill in the morning and you're good to go," Nystrom said. "My new reality at the age of 13 became doing blood glucose checks, pricking my fingers four to six times a day, giving myself insulin injections six to eight times a day."
Fortunately, Nystrom now wears an insulin pump 24/7, a built-in IV site for injecting insulin.
Fear of sleeping
For a Type 1 Diabetic, one of the dangers is blood glucose dropping to an extremely low level while asleep. If that happens, Nystrom said, it's possible to experience a seizure and die.
She began to have low blood sugar reactions overnight, and her greatest fear was not waking up.
Enter Gracie, a black-lab from Can-Do Canines out of New Hope that was trained to detect low blood sugars based on Nystrom's breath.
"It's amazing to think that these dogs, just from the scent, can do almost what technology hasn't caught up to yet for diabetes," Nystrom said in awe.
Unfortunately, after two months, it was clear that Gracie had some work to do. She wasn't consistently waking Nystrom up when her blood sugar dropped, so Gracie had to go back for additional training.
In the meantime, Nystrom received a Dexcom Continuous Glucose Monitor. The device is an IV site on her body that monitors her blood sugar every five minutes and will alarm her at night if it drops.
Counting that and her insulin pump, she wears two pieces of equipment. "I really say three pieces because my iPhone is my third," she said, laughing.
Fueling a passion
Nystrom began at Tri-County in October, but before that, she ran her own nonprofit business for diabetes advocacy.
"My job as a diabetes advocate is to let people know the seriousness of the disease," she said. "It's just making sure that people understand the severity of it."
She found her passion a year after she was diagnosed, when her mother sent her to an American Diabetes Association (ADA) camp in Hudson, Wisconsin, much to Nystrom's disdain.
"The last place I wanted to go to as a teenage girl was to a diabetes camp," she said. "And to make it worse, the camp was called Camp Needlepoint."
But it turned out that the camp was exactly what Nystrom needed.
"That week is what changed my life forever. It was the coolest place where if your pancreas wasn't working, you were in the majority," Nystrom said. "After that week, I thought, 'I just gotta turn it around.'"
Nystrom was able to share her new perspective when she became the National Youth Advocate for the ADA. It selects one young person a year to represent the entire organization, and Nystrom was selected on the three-year anniversary of her being diagnosed.
As the national youth advocate, she flew around the country advocating for the ADA. She visited the White House, Capitol Hill and more.
"I mean, here I am, a 16-year-old girl from Baxter, Minnesota who had recently just come to terms with even having this disease, and they're asking me what my life has been life with Type 1 Diabetes," she said, shaking her head.
The experience stuck, and after going to school to be a communications professional, she committed her life to diabetes advocacy full-time.
Ever since, companies have hired her to speak about her experience, how they can better communicate to people with diabetes.
Most recently, she was invited to be the featured speaker for Novo Nordisk, the number one diabetes pharmaceutical company in the world, Nystrom said, at a summit on Capitol Hill in Washington, D.C., in April.
Nystrom also recently had her first book published, If I Kiss You, Will I Get Diabetes?, a first-hand account of her experience.
Her main inspiration for the book was the lack of diabetes literature on diabetes aside from medical texts and cookbooks. As a young girl newly diagnosed with diabetes, these types of books weren't helpful.
"I was crying myself to sleep at night because I didn't know if a guy at the junior high dance was going to dance with me," she said. "I didn't know if I'd ever go to college and find somebody who wanted to be my roommate. Kids at school thought I was contagious.
"I wanted a book that answered those questions."
According to Nystrom, Type 1 Diabetes make up 10 percent of the 29 million Americans who live with diabetes. Though it is a severe disease, Nystrom said there is a silver lining.
"You get the choice of how you're going to live," she said. "Yeah, I didn't have the choice to get Type 1 Diabetes, but I had the choice of how to live my life moving forward. I could choose to mope and complain or I could say at least I get to choose to be alive today."