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Living with Type 1

Nassau County Record - 11/9/2017

Stephanie Knagge and son Ethan never leave home without key items that monitor their blood glucose levels.

The Callahan residents both have Type 1 diabetes.

Before heading out, they each take a cell phone, insulin pump, medical alert bracelet, a glucose monitor, candy and a beverage. They even have their favorite candy to help keep their blood glucose from falling too low.

"Airheads are our drug of choice," Stephanie joked. "We like Airheads because you can still eat them if they melt."

Husband Randy pitches in by helping the duo stay prepared.

"Whenever we're packing for a trip, I always pack the supplies," he said.

"He's our main line of support," his wife said.

When Ethan, 16, hangs out with friends, it's important that they're aware of his medical condition.

"Usually whoever you're with should know something about your diabetes, because if you pass out, it's usually due to low blood sugar and they need to know what to do to help you," he said.

Stephanie said it would be easier for people to understand her battle with the disease if Type 1 and Type 2 diabetes had different names altogether.

Type 1 diabetes typically occurs in children as their pancreas fails to function properly while Type 2 usually manifests in adults through obesity and other factors.

"It's not your grandmother's disease; it's completely different," she said of her and Ethan's condition.

Stephanie was diagnosed at age 10. Growing up in an unstable home environment without proper medical care adversely affected her health.

"A lot of that has contributed to the health issues I have now," she said.

The 41-year-old has issues with her kidneys and thyroid gland associated with the disease. She also has nerve pain and eye problems.

"Everything relates back to the diabetes," she said. "I fight most of it to do for my boys. Because of my childhood, they're not going to have that kind of life."

She strives to ensure that Ethan stays well as he manages his diabetes. He was diagnosed at 14.

Before the episode, Ethan had experienced symptoms, including extreme hunger and thirst, as well as glassy eyes, pale skin, night sweats and irritability.

"I kind of realized it before I told anybody," he recalled.

Although tests showed that he did not have the antibodies to become diabetic, Ethan became ill two months later.

A blood glucose monitor revealed that his blood sugar had dropped dangerously low. He almost slipped into a coma as he entered diabetic ketoacidosis.

"As a Type 1 diabetic, it was my worst nightmare come true, because I wouldn't wish that on anybody, because without our medicine we die," Stephanie said.

The teen stays active, working part time, attending West Nassau High School and taking college classes as a dual-enrolled student.

"There's ups and downs," his mom said. "On the good side, I can help him. I know the symptoms and see it before it happens."

She encourages Ethan to take care of himself now so that he's less likely to have health issues as he grows older.

"My goal for him is to help him live a long, healthy life without the complications I have," Stephanie said.

Ethan just wants to see medical researchers develop a cure for diabetes.

"But you can't really count on that," he said.

The Knagges must each meet a $3,000 yearly deductible before insurance picks up 90 percent of any expenses. Their max out-of-pocket is $6,650 per person per year.

Despite the challenges with balancing care and insurance deductibles, his mom tries to maintain a positive attitude.

"You can live with it," she said. "You can be healthy. Although it's an annoyance and it feels like a death sentence at times, there are tools available to help you live a normal life."

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