From left to right, Sarah Burnett, her mother, Tonya Burnett and Sarah's younger sister, Shelly, 11, talk about how having diabetes effects the family as a whole. Shelly doesn't have the disease but knows a lot about it from watching and helping her mother and sister deal with it on a daily basis. World Photo by Madeline Steege
At 14, Sarah Burnett loves playing basketball. She likes to hang out with friends and has a boyfriend. And true to tradition, the quiet-spoken eighth-grader, with long and curly reddish-brown hair, has challenged her parents at times.
But she also is very different from most teens, in that Sarah is living with Type 1 diabetes.
"My pancreas doesn't produce insulin," she explains unemotionally.
It's a routine, a fact of life to Sarah, but it can be unnerving and confusing to other kids her age. That is until Sarah educates them.
Simply, her pancreas, a gland near her stomach, stopped producing the hormone. Insulin tells the body's cells how to utilize sugar and/or carbohydrates. Without it, a person will die.
Typically, Type 1 diabetes is diagnosed in children or young adults. It's uncommon, according to the American Diabetes Association, affecting 5 to 10 percent of the 18 million Americans with diabetes. In people with the common Type 2 diabetes, there isn't enough insulin or cells ignore it.
Four years ago, on Christmas Eve, a physician diagnosed Sarah with the disease. Since then, she has had to learn how to test her blood sugar and give herself insulin.
"Obviously, it was scary at first," said Tonya Burnett, Sarah's mom, "but she's doing OK. She's stuck to it."
Sarah had some inspiration, a mentor. Her mom was diagnosed with the disease 25 years ago. Burnett already has diabetes-caused neuropathy, where nerves begin to shut down, and other complications. Thanks to technology, Burnett expects Sarah will have an easier time dealing with the disease.
Both are now outfitted with mini-insulin pumps, small little plastic boxes.
"Most people think Sarah and I are just trying to look important with pagers on our hips," Burnett said.
The pumps dose out insulin through a needle inserted just under their skin. But it's not automatic. Both of them must count their carbohydrates before each meal. And, they check their blood sugar. Throughout the day, they program the pump to dose the insulin. That allows them to try to prevent some of the drastic highs and lows in blood sugar. The payoff, they say, is that they can eat just about anything - not that they always do.
"If you follow the rules, you can live a very healthy life," Burnett said.
They pumps also have enabled them to cut down on trips to the hospital emergency room.
"There's an awful lot of research trying to understand and predict who's going to get diabetes," said researcher Kenneth Ward, M.D. "The problem is there's no way to prevent it."
So Ward, who works through Legacy Health System in Portland, is working on the other end to help people like Sarah who already are struggling with the disease. He and a team of four other researchers are building a continuous glucose sensor. The plan is for it to hook into a person's insulin pump to function as an artificial pancreas.
"If we can perfect this device, it would meter out the proper amounts of insulin all the time," he said.
The device is a little disc, about the size of four quarters stacked together. It's made out of platinum, silver and plastic, with electrodes. It would be implanted under the skin. The problem is the body sees it as a foreign invader and tries to wall it off with a scar capsule. The goal is to stop or slow that so the sensor could remain in a person's body at least a year.
"This is a big tough problem and other labs around the country are working on it," he said.
Right now, Dr. Ward and his co-researchers are experimenting on rodents. Within the next couple of years, they hope to begin testing in people once they've convinced federal regulators their device is safe.
Even then, it may be years before such a device is available to people such as the Burnetts.
For Tonya Burnett, it's easier to cope by networking with other people who are Type 1 diabetics. They can share successes, ideas and discuss problems. And while there is a summer camp near Portland for children and teenagers such as Sarah with Type 1 diabetes, it can't offer that support and inspiration year-round.
Burnett would like to start a support group specifically for families dealing with Type 1 diabetes locally. Her goal also is to work with the schools so teachers and other staff learn how to recognize and address problems experienced by children with Type 1 diabetes.
"There's a lot of us and we just don't have other people to talk to," she said.
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Those interested in contacting Burnett, can call her at home at 269-5347 or at work at 267-3322.
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I am sad to see the tower go..I used to take my children (Now grown) there to fish for the perch under the pilings. But I am even sadder to see the originally proposed boardwalk will no longer be a part of the development. I was looking forward to walking my Grandchildren down it.
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