“It is frightening, because most of our T1D kids don’t ‘look’ sick, even though without insulin they would die,” said Shelly Rafter of Lantana. “They can go from ‘fine’ to ICU/ER admission in a matter of minutes and it is terrifying.”
Type 1 diabetes (T1D), once known as juvenile diabetes or insulin-dependent diabetes, is a chronic autoimmune disease. It happens when the pancreas produces little or no insulin, a hormone needed to allow sugar (glucose) to enter cells to produce energy. It’s also an “invisible” disease.
Rafter’s 10-year-old daughter, Harlie, was diagnosed with T1D this May.
“Her blood panel in July 2015 was a normal 89,” said Rafter. “And this May, it was up to 500 in the ER; and, she was already in DKA (Diabetic Ketoacidosis) and stayed in the hospital for three days.” DKA is a serious condition for people with T1D. It can lead to diabetic coma or even death.
T1D occurs when the body’s own immune system — which normally fights harmful bacteria and viruses — mistakenly destroys the insulin-producing (islet) beta cells in the pancreas. While its causes are not yet entirely understood, scientists believe that exposure to certain viruses, genetic factors and environmental triggers are involved.
Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and—at present—nothing you can do to get rid of it. Although type 1 diabetes usually appears during childhood or adolescence, it also can begin in adults.
Signs and symptoms can come on quickly and may include: Increased thirst, frequent urination, bedwetting in children who previously didn’t wet the bed during the night, extreme hunger, unintended weight loss, irritability and other mood changes, fatigue and weakness, blurred vision, in females, a yeast infection.
The onset of T1D symptoms can come on quickly, but may not always be diagnosed as quickly; especially in growing children. Harlie’s mom is an RN and even with her medical knowledge, it was a couple of months before she added up the signs.
“We’d been on vacation in Disney World and it was hot, so of course, she was thirsty and we just kept her hydrated,” said Rafter. “She was more hungry, but I was thinking it’s a growth-spurt; typical for any 10-year-old. A couple months later, though, she wanted to take a nap instead of going shopping. I knew something was wrong.”
Harlie’s new medical reality meant a crash-course in T1D education for her father, Mike, and sister, Haven, 11.
Rafter said the reaction from the faculty and staff at E.P. Razor Elementary School and her fifth-grade classmates and friends have been extremely supportive. In addition, there’s a group of about 20 people who either meet or chat on Facebook to share information and support one another. Rafter said the group’s working on creating a local support Facebook page.
“She misses 15-minutes of math every day before lunch to do her pre-lunch blood test, but there are staff and administration members who have family members with T1D, so they’ve been fantastic,” said Rafter. “She’s had no problem with any students and her friends have been really supportive; some of them even know how to take her blood sugar if it’s needed and they all know what to do if she has an emergency.
“T1D is 24/7; it never stops,” said Rafter. “I don’t know how people with no medical knowledge or a single parent without a support group handle it; I really don’t.”
The Rafters have had support from another Lantana family, the Quilty family, especially daughter, Lexi, 15, who also has T1D. The Guyer High School student has helped Harlie realize how she can have a positive impact for others.
“Harlie did her first JDRF [Juvenile Diabetes Research Foundation] One Walk, set a goal of $300, but raised $1,200 for her very first walk,” said Rafter. “All that support made her so happy. She’ll make a difference to someone who has yet to be diagnosed.”
November is Diabetes Awareness Month and Rafter hopes that more people will become aware of the silent struggle that area families deal with every day.
“Both children and adults like me who live with type 1 diabetes need to be mathematicians, physicians, personal trainers and dietitians all rolled into one. We need to be constantly factoring and adjusting, making frequent finger sticks to check blood sugars and giving ourselves multiple daily insulin injections just to stay alive,” said JDRF International Chairman, actress Mary Tyler Moore.