Published: November 06, 2009 11:15 am      

Enlightened communities help kids cope with Type 1 diabetes

PRINCETON — When Kim Barnett's 14-year-old daughter was diagnosed with type 1 diabetes six years ago, her family's life was changed forever.

But it wasn't so much the constant checking of blood sugar levels, the insulin injections, or the more careful dietary planning requirements that made things more difficult. More so, it was the public's unawareness of the disease and its effects that presented the toughest challenge for the local child and her family.

“Mainly, even in the school system, and just people in general don't know the symptoms of type 1 diabetes,” said Kim, an employee of the education department at Princeton Community Hospital. “A lot of the problem is that people don't know the care that's entailed with this disease. It hasn't stopped my daughter from living life; she plays three sports, and it hasn't stopped her as far as academics, either. She wears an insulin pump, but we've kind of adapted to that; it's just something you run with, grab it and go. But, from the community perspective, people need to know that kids with type 1 diabetes shouldn't be treated differently. We just want to bring an awareness that it needs to be taken a little more serious than it is.”

The Barnetts, along with a group of devoted community members, took a giant step towards that local awareness last night, when they hosted the area's first T-1 Enlightenment event on the steps of the Mercer County Courthouse. As a part of National Diabetes Month, T-1 Enlightenment ceremonies were started last year across the country in an effort to strive toward a cure for the disease that affects one in every 400 children in America. This year, Nov. 5 became the date for the second annual nationwide awareness observance.

Inspired by Harrison, a seven-year-old Connecticut boy who made it his goal to inform the nation about type 1 diabetes after he was diagnosed with the disease four years ago, T-1 Enlightenment events include the lighting of numerous “T-1 luminaries”, along with public discussion of type 1 diabetes. According to the organization's website, the ultimate purpose of T-1 Enlightenment is to increase government and private funding for a cure and to gain compassion and understanding for those with the disease through the enlightening of the public.

“People talk a lot about type 2 diabetes in children, but 90 percent of all childhood cases of diabetes are type 1,” said Pediatric Endocrinologist Teresa Frazer, of the Bluefield Regional Medical Center, who spoke at last night's event. “Tonight, we heard these local kids talk about the situations they have encountered, things that are funny, irritating and embarrassing, because people are unaware of what type 1 diabetes means. I have people ask me all the time, 'Well, they have insulin; aren't they cured?' You want to be sensitive about these things, like people know about breast cancer. This is one area where people can help children, but we need to learn the right way, and the right words.”

That was the purpose of last night's ceremony, which began with an address by local pastor Larry Dyer, and continued with type 1 diabetes information sharing from Frazer and candid discussion from several young, local children with the disease. Unlike type 2 diabetes, Frazer said, type 1 is not caused by obesity, and it can not be prevented by dietary or exercise changes, but it can be related to genetics.

“Type 1 diabetes is an autoimmune disease, meaning the body makes an antibody like it would to attack a germ, but instead of attacking germs, the antibody attacks a part of the body,” she explained. “With this disease, it attacks the pancreas, and destroys it over time. So, when a child is diagnosed with type 1 diabetes, they have to become their own pancreas. They have to think about how much insulin they need if they eat this amount of carbohydrates, and they have to think about things like, if they exercise after they eat, they need less insulin, but if they sit down and take a test and get stressed, they might need more.”

The average onset of type 1 diabetes, Frazer said, occurs at age ten, and after that initial diagnosis, it becomes a lifelong condition, forcing the child to live a life that is permanently dependent on insulin. While type 1 diabetes patients can lead normal, active lifestyles, they have to learn how to be constantly aware of their blood sugar, and how much insulin they need to inject themselves with to control it.

“They have to test themselves seven to ten times a day, before meals, and two hours after each meal, and anytime they're going to exercise or drive a car,” said Frazer, who has treated more than 100 area type 1 diabetes patients over the past five years. “Testing doesn't take long, but it hurts, and these kids are trying to live a normal life while they're testing their blood sugars this many times, and injecting insulin. And then, after about 20 years, they can start getting into some complications of diabetes, like amputations of the lower extremities, blindness, and kidney failure; one-half of all kidney transplants go to people with type 1 diabetes.”

And that, she insists, is why awareness events like yesterday's T-1 Enlightenment ceremonies are so important, because, in the fight to find a cure, nothing is more crucial than public support and a recognition of the disease and all of the young people it affects.

“Children with type 1 diabetes are still three times more likely to die than children without the disease,” she said. “When a child is diagnosed with this disease, they and they're families go through the same five stages as a person dealing with grief or death, and they need all the encouragement they can get from the community. Plus, we need better tools to take care of diabetes. There is technology out there that has been under testing for 30 years, but it's still not released for use. It's fascinating to think that almost 90 years after insulin injections were invented, we still don't do a good job of giving people insulin, simply because we don't have the right tools yet.”

Some helpful technology has been developed in the fight to make life as normal and healthy as possible for diabetes patients, she says, but even with those advancements, better public understanding is a must.

“There is some wonderful technology out there that our kids are utilizing, like pins that allow you to dial up the insulin amount you need to inject and it's all right there, as opposed to how we used to keep insulin refrigerated,” she said. “Then, there is an insulin continuous infusion pump that's about the size of a cell phone that they wear on their waist with small tubing like an IV into their stomach, which makes it much easier to control. Several children in the area wear pumps or glucose monitors, but I had a 16-year-old patient have his pump ripped out of his stomach by a teacher who thought it was a cell phone, which is why we need more awareness. These kids don't need people doing and saying insensitive things, just because they don't know any better.”

It's essential for everyone in the community, whether they're directly affected by type 1 diabetes or not, Frazer says, to learn about the disease. That knowledge is crucial, she believes, because of one simple truth.

“Within the past couple of years, a bill went before the West Virginia State Legislature that would have required all fast food restaurants to put their carbohydrate and calorie counts on their menus, and it was turned down with the statement that 'West Virginians didn't want to be told what to do,'” she said. “I later diagnosed a 14-year-old with type 1 diabetes, and his dad remembered that bill, and he said to me, 'I had no idea how important that would be to us.' That's why people need to be aware, because of what he found out, that you never know when it's going to happen to you or someone you love.”

And that simple yet critical awareness was the entire reason for last night's Mercer County T-1 Enlightenment event, Barnett said.

“It started out as something we were just going to do in our neighborhood, but then so many people started calling and wanting to be involved in it,” she said. “It just kind of grew, and we just wanted to make people aware that these kids aren't any different; they're not contagious; they just have type 1 diabetes.”

Nov. 14 is World Diabetes Day, and on Nov. 19, PCH will host a “Management of Diabetes” event. To learn more about T-1 Enlightenment or what you can do to help, visit www.t-1luminary.org.

— Contact CharLy Markwart at cmarkwart@ptonline.net.