LEXINGTON, Ky. (July 5, 2018) – When Leslie Scott was a little girl, she watched as her mother struggled with the challenges associated with type 1 diabetes. Not just managing the disease, which involves regular blood sugar checks and insulin injections, but rather handling the stigmas and misconceptions people have about diabetes.
"She wasn't allowed to participate in things because of her disease, and I saw the impact it had on her," said Scott, UK pediatric nurse practitioner and certified diabetes educator. "I didn't want that to happen to anyone anymore."
Scott earned her undergraduate degree in nursing from Gardner Webb University and a Master of Science in Nursing from the University of Kentucky. She completed her doctorate degree in nursing, also from UK, in 2004. As a pediatric nurse practitioner, she has worked with young patients for over 20 years helping them learn to manage their diabetes. In her practice at UK's Barnstable Brown Diabetes Center, she recognizes that management in a clinical setting is different from how children and their families manage diabetes at home and in school.
"Some of these kids, especially in rural communities, may be the only child in their school or community with type 1 diabetes," Scott said. "They tell me they feel different, and they are treated differently."
In 1995, Scott was invited by fellow diabetes educators to Camp Hendon, a week-long summer camp in rural Kentucky for children ages 8-17 with type 1 diabetes. The children get to participate in traditional summer camp activities such as swimming, canoeing and rope courses under the supervision of nurses, dietitians and adult counselors who often also have diabetes. She has participated in diabetes camp ever since.
"I hear kids say all the time that the camp gives them a week to be normal, and to interact with kids who are just like them," Scott said. "So for one week a year, they are just like everyone else."
What separates Camp Hendon from other summer camps is how diabetes management is incorporated into camp activities.
"Everybody stops for blood sugar checks. Everyone counts carbs. Everybody takes a shot when they're done eating," Scott said. "The campers learn how their physical activity impacts their blood sugar."
And for Scott and the UK pediatric nurse practitioner students who have worked at that camp in the past, the experience of treating young patients, monitoring their health and making on-the-fly adjustments to medications is an invaluable experience.
"[The camp] gives health professionals a chance to see diabetes management in action, and gain a better understanding of what we're asking families to do when caring for their child," Scott said. "I don't think many providers truly understand the full psychological impact diabetes has on a child and their family. My hope is that by participating in diabetes camp, future primary care providers can have a better understanding of diabetes management and be supportive of the struggles many families face in caring for their child with diabetes. Each year, my work with diabetes camp is the hardest work I do all year."
Education is the cornerstone of diabetes management, says Scott. The obstacles faced by children with type 1 diabetes can impact their psychological and physical development. Scott cites as an example a student with diabetes who is taking a test a school and experiences low blood sugar. That affects their cognition which in turn affects their academic performance. For college students, the obstacles are intensified when they experience stress, irregular sleep patterns and lack of schedule.
"We require a lot from nursing students, and that can affect how they manage their diabetes," Scott said. "Diabetes is easier to manage when you eat consistently, exercise regularly and when you're on a consistent schedule. That doesn't always happen for the college student."
And while educating children and young adults about how to manage their diabetes is important, Scott believes educating people who don't have diabetes is just as important. That begins with understanding the difference between type 1 and type 2 diabetes.
"Children with type 1 diabetes had zero input into the development of this disease," Scott said. "People often say 'you got diabetes because you ate sugar' or 'you can't eat this food or do that activity because of diabetes.' And they can. As long as they take responsibility for the food, and take insulin to cover the food, they can. We can do without the food police."
New technologies and better treatments make managing diabetes better. For example, glucose sensors paired with a smart phone app can alert to a drop in blood sugar. Children often don't have the developmental ability to always tell when their blood sugar is low. Some adults, such as Scott's mother, have lived with type 1 diabetes so long they are unable to tell they are low. These improvements in technologies have helped some families feel more secure in their management of type 1 diabetes.
Even with the new technologies, Scott believes early education is still the key to helping children manage their diabetes. Through establishing habits, learning to count carbs, administer insulin, and the networking and support provided by places like Camp Hendon, children learn they aren't defined by their diabetes. This experience provides education and support in a way that doctors and nurses in clinic settings can't.
"At camp, we can see in real time how a child's energy can affect diabetes, make dosage changes accordingly, and manage diabetes day-to-day outside the clinic environment," Scott said. "It is real-time learning and a great experience for everyone."
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