Type 1 diabetes (formerly juvenile diabetes) and how to manage it

A Bellbrook teen shares her story.She’s different but no less dynamic.

Unless you or someone you love has been diagnosed with Type 1 diabetes, it’s hard to comprehend the daily vigilance that is required to manage the disease, formerly known as juvenile diabetes.

According to the American Diabetes Association, of the nearly 26 million people in the United States who have diabetes, only 5 percent have Type 1. Typically diagnosed in children and young adults, Type 1 diabetes is considered an autoimmune disorder in which the person’s own immune system attacks and destroys the cells in the pancreas that produce insulin.

Managing the disease involves a handful of elements including blood glucose [sugar] control, insulin management, exercise and diet. But for Type 1 patients who want nothing more than to just be “normal” like their peers, managing their disease not only involves learning a lot about their own physiology, but it also often takes them on an emotional journey of self-discovery.

“The most difficult thing so far has been having to manage my diabetes everyday no matter what,” said Bellbrook High School junior Kelsey Collins. Kelsey was diagnosed with Type 1 diabetes when she was just 4 years old. Though she is now a well-adjusted 17-year-old, who excels in schools, holds a black belt in karate, plays the trumpet in her high school band and sings in the choir, the path to her present situation was full of many ups and downs.

“I just wanted to be like every other teenager even though I’m not,” said Kelsey. “In middle school, I ignored my disease, but it was there, and I just got in more trouble when I did that. It is hard to constantly have to check my blood sugar and make sure everything is OK, when I just want to go hang out with my friends.”

From unpleasant pokes to the pump

Kelsey started out her treatments with insulin injections, which proved to be challenging for both her and her family. As most parents know, the appetite and willingness of a preschooler to eat at any given time is often unpredictable, making the timing of insulin injections difficult. “She [Kelsey] had to eat at a certain time, when the insulin was the most effective,” explained Kelsey’s mom, Hila Collins. “However, as a preschooler, she didn’t always want to eat the amount of food that she was supposed to have at that meal. Between the shots and the required food intake, dinnertime was not a pleasant experience at first.”

Thankfully, after about a year, life got a little easier when Kelsey was switched to an insulin pump. The pumps are small, computerized devices that deliver insulin via a tube inserted through the skin and taped in place. Though the patient still has to monitor their blood glucose levels, the pump provides more flexibility in what and when a patient eats.

“We usually do not start the pump at diagnosis since it is an overwhelming time with a lot of information passed onto the family at once. The decision of when to start on a pump is left up to the family and patient,” said Paul Breyer, MD, medical director of endocrinology at Dayton Children’s Hospital. “We want to make sure that everyone is comfortable with the technology and is comfortable with the additional responsibilities it entails. Sometimes the insurance company does dictate how long the family must wait until they can receive a pump.”

But even as the physiological management of her disease was becoming easier, as she got older, the emotional side of living with diabetes began to take its toll. “As an early teenager, the biggest challenges centered around her denial of her disease,” said Hila. “She would ‘forget’ to do her blood sugar at lunch when she was at school or not eat when she was supposed to.”

Diabetes is what she has, not who she is

Things began to change for the better when Kelsey realized that her diabetes did not define her — that she was not a diabetic, but rather, a young lady who has diabetes — a distinction that her mother says has made all the difference.

Today, Kelsey is continuing to benefit from research on diabetes and has been switched to a new type of insulin pump called the OmniPod Pump. “The Omnipod is a insulin pump that is ‘tubeless.’ The pod contains the insulin, and it is attached to the body and gives the insulin directly. There is a PDA device that you check your blood sugar with and with it you direct the pod to give insulin,” said Dr. Breyer. What’s even better? This new pump looks a lot like a cell phone so that when the patients check the pod, it just looks like they’re playing with their cell phone.

Unfortunately, diabetes is no longer Kelsey’s only health issue. Over the last two years, Kelsey has been diagnosed with two other autoimmune disorders: hypothyroidism and Addison’s disease. Although kids with Type 1 diabetes are at a higher risk for developing other autoimmune problems, diabetes does not actually cause them.

But true to her positive spirit, Kelsey is using her current situation to benefit others. Because of each of her conditions, Kelsey has experienced many different doctors, nurses and caretakers, which is why she has been chosen to be an ambassador for Dayton Children’s hospital, sharing her experiences with medical residents so that they may gain an understanding of how to better communicate with their patients.

As for Kelsey’s advice to other kids facing a Type 1 diabetes diagnosis, she says, “there will always be times when you struggle and there will always be times when you just wish you were a normal person but you’re not, you’re different. You have to realize that your diabetes won’t always define you, but it can make you a better person. It makes you realize that there are struggles in life but you can overcome them.”

For more information about Type 1 diabetes or to link to the Planet D website, visit: www.diabetes.org.

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