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Taking charge: Young Kearneyites won't let Type 1 diabetes struggles define them

Taking charge: Young Kearneyites won't let Type 1 diabetes struggles define them

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Kameran Dostal

Kameran Dostal lifts her shirt to show the continuous glucose monitor she wears to monitor her blood sugars.

KEARNEY — On April 18, 2017, Harper Rundle, then 8 years old, was rushed to the emergency room. As her blood sugar soared to 600, doctors diagnosed her as having Type 1 diabetes. Had she not been in the ER, she would not have lived through the night.

“It was a very scary night,” her father Mac said. Harper calls it something else: her “diaversary.”

Type 1 diabetes, formerly called juvenile diabetes, is a chronic condition in which the pancreas produces little or no insulin.

Crystal Hinrichs, a Type 1 diabetic for 16 years, put it this way: “I don’t look sick. You can’t see that my pancreas is no longer functioning. But there are no days off, no vacations, no breaks from constant blood sugar monitoring and carb counting.”

Siena Bonk, 13, must be closely monitored when her blood sugars skyrocket because she could go into a diabetic-inducted coma if she doesn’t get them back to a normal level of 70-120.

Kameran Dostal

Kameran Dostal made this T-shirt showing how the price of insulin has soared in recent years.

Kamaren (Ulferts) Dostal, 25, an art teacher in the Kearney Public Schools, has lived with Type 1 diabetes for 12 years. She calls it an “invisible disease that is not preventable. Many people think diabetes can be avoided by living a healthy lifestyle, and that isn’t true.”

Four years ago, as a student at the University of Nebraska at Kearney, Dostal started a chapter of the College Diabetes Network. She also helped establish an annual walk to raise funds and awareness. She is helping plan the fourth annual Tri-City JDRF One Walk in Kearney next spring.

A new event, the JDRF One Walk Kickoff will be Nov. 21 to raise awareness of both Type 1 diabetes and next spring’s walk.

Diabetes management is easier now, thanks to developments like continuous glucose monitors, a sensor inserted into the skin that shows blood sugar levels at all times; and the insulin pump, an electronic device that has a catheter that is inserted into the skin that can provide constant insulin delivery.

But it remains a challenging condition, and there is no cure.

Harper Rundle

Harper Rundle, 12, plays like other children as she carries Addie Kohmetscher on her back, but her Type 1 diabetes must be monitored constantly. She was diagnosed four years ago.

Harper Rundle

“Diabetes is a lot more than just giving myself insulin,” Harper said. “It’s managing my numbers and watching everything I eat. It affects more than just my blood sugar. It affects the way I feel if my blood sugar is low or high. It affects my mood. It affects my eyesight in the long term. Mentally, I get tired of monitoring all this all the time.”

Crystal Hinrichs

Before Hinrichs was diagnosed 16 years ago, she was a “super-healthy” 21-year-old with a packed schedule who was preparing to go to graduate school. Now, she looks back and realizes she had symptoms for a long time — frequent urination, thirst, fatigue and dizziness — but she ignored them.

“Before my diagnosis, I was terrified of needles. It was a shock to learn I would have to give myself a minimum of four injections a day just to stay alive,” she said.

“Controlling Type 1 diabetes can still be a daily struggle. So many factors like stress and illness affect my blood sugar that are out of my control,” she said.

COVID presented new challenges. Hinrichs was terrified because so much was unknown. People with diabetes who get COVID can be at greater risk of complications. “At the time, I was working hands-on with COVID patients praying my immune system would hold strong. Insulin supply issues were a concern at one point, too,” she said.

One day, her pharmacist asked Hinrichs how many vials of insulin she had stockpiled because she wasn’t sure when the next shipment of insulin would be available. “The look in her eyes is something I will never forget,” Hinrichs said.

At the time, she had just two vials of insulin because of strict insurance stipulations, but she met with her endocrinologist via telehealth to minimize unnecessary exposure to COVID. “Diabetes can never take the back burner to what is going on globally or in any aspect of your life. It can’t be pushed to the side and dealt with when everything else is under control,” she said.

With the support of family and friends, Hinrichs has developed a strength and resilience she didn’t know she had. “Now I want to join the fight for all the children and adults who deal with this disease,” she said.

Siena Bonk

Siena Bonk was diagnosed at the age of 8. She’s now in seventh grade at Horizon Middle School.

Siena Bonk

Siena 13, a Horizon Middle School student, marked her five-year diaversary in July.

Her schedule mirrors that of many teenagers. She is a catcher for Central Nebraska Softball Academy KRUSH 08. She dances at The Dance Works-Jazz, Contemporary & Hip-Hop and attends Edge, the youth group at Prince of Peace Church.

But her life is far from ordinary. “Siena’s diabetes is affected greatly when she is sick,” Mark, her father, said. “She has had blood sugars in the 30s, 40s and low 50s for a few hours at a time. Then, for no reason other than being sick, her blood sugars can skyrocket to 400 or above, and we have trouble getting them to drop.

“When this is happening, she has to be closely monitored because she could go into a diabetic-induced coma if she doesn’t get her blood sugars back to a normal level of 70-120,” her mother Christine said.

She is fully vaccinated for COVID and got a flu shot this year, but nevertheless, she got the flu and strep throat in October.

She carries the latest technology to monitor her diabetes, so her lows are not as severe as they once were.

When her blood sugars climb too high, her CGM tells her insulin pump to give her extra insulin automatically. “She still has to dose every time she eats/drinks, but if she is starting to spike, it helps to slow down her rising blood sugars,” Mark said.

Siena sees an endocrinologist (diabetes doctor) four times a year to help manage her blood sugars and check her A1C. She sees her optometrist once a year to monitor vision and diabetes complications. She also sees a therapist to help manage her anxiety and mental health.

Kameran Dostal

Kameran Dostal shows off the earring she made with empty insulin vials. The cost of that insulin was $700.

Kameran Dostal

Dostal, 25, said people assume Type 1 diabetes is “easy to manage, but that isn’t true. Every decision I make impacts my blood sugars: exercise, meals, snacks, stress, staying up late, taking cold medicine and more,” she said.

She also recalls having calloused fingers due to the 20-plus needed finger pokes every day to test her blood sugar. New technology has made that unnecessary, but Type 1 diabetes is still not easy.

Diagnosed at age 12, Ulferts said, “During middle school and high school, a piece of me thought my diabetes would magically turn off. In college, I came to understand that I have diabetes and it will not be going away.”

She said, “When I got to college, I finally started speaking out about my illness. I came to realize how much of an impact I could have on this world if I simply changed my attitude.”

She sought counseling for anxiety caused by diabetes. “My counselor told me, ‘You can’t choose what happens to you, but you can choose how you react to it.’”

She was also inspired by a quote in a book written by Viktor E. Frankel, a psychiatrist and Auschwitz concentration camp survivor: “In some ways suffering ceases to be suffering at the moment it finds a meaning.”

“Instead of thinking, ‘Why me?’ I now look at diabetes with a more positive outlook,” she said. “Instead of getting upset when people ask sometimes ignorant questions, I respond with education and advocacy. I’m able to teach them about diabetes in a way that is helpful to them and to me.”

As part of that, she established UNK’s first College Diabetes Network chapter.

Dostal maintains close, rewarding relationships with other Type 1 diabetics.

“Type 1 diabetes is such a complex illness, and seeing so many individuals of all ages thriving with it has inspired me to work harder and to be better with my diabetes care,” she said.

maryjane.skala@kearneyhub.com

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