Photograph by Jacqueline Ramseyer
Fighting Diabetes: Four-year-old Trevor Weinstock gets his blood glucose level checked by his mother, Melanie, who has to stick his finger with a special needle several times a day. Trevor was diagnosed with Type 1 diabetes at the age of 2.
WG's Diabetes Society helps families deal with disease
Taste of Willow Glen to benefit area nonprofit
By Kate Carter
Melanie and Steve Weinstock are a working Willow Glen couple raising two young children and dealing with a chronic and incurable disease.
Their oldest child, 4-year-old Trevor, has Type 1 diabetes. His body cannot make the insulin necessary for nutrients to enter his cells, so his parents must carefully balance the amount of injected insulin he receives and food he eats with his normal preschool-age activity and interests.
"It's very difficult to control in a toddler, when he can't tell you" how he feels, Melanie says. "We check Trevor's blood sugar anywhere from eight to 10 times a day. We carry a calculator everywhere we go. It's a lot easier said than done."
The Weinstocks are among more than 26,000 people who benefit from the programs and services of the Diabetes Society of Santa Clara Valley, located in Willow Glen, 1165 Lincoln Ave., Suite 300.
The Diabetes Society will provide more help to diabetics and their families using proceeds from next week's first-ever Taste of Willow Glen event.
The July 18 benefit, sponsored in part by The Resident, is also an opportunity for local Willow Glen businesses to get more exposure, says Lizet Llamas of Willow Glen's Marketing Maniacs, which is producing the event.
Taste of Willow Glen participants will roam Lincoln Avenue between 5 and 8 p.m., stopping in at the more than 30 restaurants and retailers to receive fun and tasty samples. Tickets cost $30 and can be purchased through ticketweb.com online or by calling 866.468.3399. Five dollars of each ticket goes to the Diabetes Society, executive director Sharon Ogbor says.
The society is the largest provider of services to diabetics in the Bay Area, Ogbor says. The independent organization was begun in 1963 by local parents who wanted to provide more for their diabetic children, she says.
The nonprofit organization with an annual budget of $1.1 million depends on grants from foundations and corporations, as well as individual donations, to operate its outreach and education programs and youth and family camps. It also boasts some 350 volunteers.
About 600 people are clients who receive help controlling their diabetes from the organization. Another 600, mostly youths, participate in educational and social camps just for diabetics and their families. The day- and extended camps are geared for different age groups but all with the same purpose--to help people with diabetes learn to live with their disease.
Young Wisdom: When Trevor wants a snack, his mother, Melanie, must calculate his carbohydrate intake and ration out his snacks, such as peanuts, in a measuring cup, so that Trevor's blood glucose maintains a steady level. Melanie says that for "every single morsel of food that goes in [Trevor's] mouth, we have to calculate [the carbohydrates]."
Photograph by Jacqueline Ramseyer
Growing Problem
About 16 million Americans have Type 1 or Type 2 diabetes, says Paige Reddan, the Diabetes Society's director of client services and education. Both types of diabetes are conditions that prevent glucose from getting from a person's bloodstream to their tissue cells. Type 1 is the form of diabetes that involves regular insulin injections while Type 2 has recently been making headlines as an increasing health problem. In both cases, the cells in diabetics' bodies cannot absorb glucose--what carbohydrates become when broken down in the stomach.
Instead, the glucose remains in their blood streams as blood sugar. High levels of blood sugar act like an acid in body vessels, Reddan says, and over time can corrode veins and arteries, leading to common complications of diabetes like vision loss, kidney failure and loss of circulation in the extremities which can lead to amputations.
"Diabetes isn't the thing that kills you; diabetes makes your body fall apart," Reddan says. "Diabetes doesn't go away, but you can control it very well."
People, like Trevor, who have Type 1 diabetes, have pancreases that can't make insulin, the substance that helps glucose move from their bloodstreams into body cells, Reddan says. Usually, Type 1 diabetes is diagnosed in children and was previously referred to as juvenile diabetes.
People with Type 1 diabetes are genetically predisposed to the disease. The disease is triggered by a virus that, over several years, reduces a person's ability to make insulin until they begin to show symptoms of diabetes: excessive thirst and urination, weight loss and dizziness or seizures.
Only 10 percent of those with diabetes have Type 1, though. The other 90 percent, the growing population of diabetics, have Type 2 diabetes.
People who have Type 2 diabetes can make insulin but their cells are resistant to it. They are also genetically predisposed to the disease but it used to be more common in the elderly, Reddan says. Over the past decade, however, more and younger people have been diagnosed with Type 2, which is triggered by obesity and high blood pressure, as well as old age.
"There's a huge increase in Type 2 diabetes. It's becoming an epidemic," Reddan says, adding that the incidence of Type 2 diabetes in people in their 30s has gone up 75 percent in the past five to 10 years. "It's all about lifestyle."
Reddan attributes the increase in Type 2 diabetes to the availability of junk food and reduced physical activity, noting that 80 percent of Type 2 sufferers are overweight. People who may be at risk--especially those with family histories of the disease--should have an annual physical and fasting blood sugar test as well as occasional blood glucose screenings at random times, she says.
Willow Glen resident Joe Mancuso, though, doesn't have a family history of diabetes and has never been a heavy man. Mancuso, 82, was diagnosed with Type 2 more than 20 years ago. Reddan says Mancuso's diabetes was triggered by old age as it generally had been at that time.
Mancuso controls his diabetes by monitoring his blood regularly every day and avoiding foods high in sugar and carbohydrates, which is tough, he says.
"I love pasta," Mancuso says.
He also visits the gym four times a week where he uses the treadmill and bicycle machines
"I feel great," Mancuso says. "As far as diabetes goes, I feel really good."
Mancuso has been visiting Reddan at the Diabetes Society once a month for the past three years to review his blood sugar and food intake records.
"It relaxes my mind, talking to her," he says of discussing with her how to control his disease. "After you've had it as long as I have, though, you know what's going to drive it up. I kind of get carried away sometimes."
Photograph by Jacqueline Ramseyer
Medical Advances: These are the life-saving tools that are a permanent part of Trevor Weinstock's lifelong reality of living with Type 1 diabetes. Included in the photo is the insulin machine, lower center, that he must wear at all times, and an instrument that's used to check Trevor's blood sugar glucose level several times a day through finger-needle sticks.
Better Control
Reddan says the Diabetes Society is developing more programs for youth and others at risk of Type 2 diabetes.
"Diabetes education is relatively new," she says. "We gently encourage people to incorporate healthy choices."
Reddan also says that people with diabetes don't have to cut enjoyable foods entirely out of their diets. New research and technology has led to more individualized treatments of the disease, she says. Diabetics can test peoples blood sugar more quickly and more often, giving them more knowledge and control of their health which can allow them the occasional cookie or slice of cake.
"You can eat more than most people think you can," she says.
In addition, diabetes' expensive medication and treatment tools are increasingly covered by most health insurance, Reddan says, so people have more options than before.
The Weinstocks are using new technological developments to better control diabetes in their active child.
They first discovered Trevor had diabetes two years ago. Melanie, an emergency room nurse, noticed him urinating and drinking excessively--"all of the alarm bells went off in my head," she says--and he was officially diagnosed soon after.
Melanie and Steve learned to monitor every crumb that Trevor ate, to keep constant check on his blood sugar level and to administer as many as five insulin injections every day.
"He was constantly eating," Melanie says. "And trying to get a 2-year-old to eat when he wasn't hungry--it was impossible. We felt like we were feeding the insulin rather than a toddler's diet."
Dealing with the disease merely added to the family's challenges--maintaining their own busy schedules and raising a growing boy and his newly arrived sister, Kate.
In May 2000, though, Trevor received an insulin pump, a device that administers small doses of insulin into his body at regular intervals all day long. The pump helps keep Trevor's diabetes more controlled and less time-consuming, Melanie says.
The insulin pump looks like a pager that Trevor wears in a pouch around his waist. It contains an approximately three-day vial of insulin, which runs through a thin line into his backside. The vial must be replaced and the line reinserted by a needle about every three days, but it is easier for his parents to change his insulin levels with his appetite, and it reduces the number of injections he has to receive, Melanie says.
"The pump has allowed greater flexibility with him," she says. "It has made it a lot easier to manage his diabetes, but it's still not a cure."
Photograph by Jacqueline Ramseyer
Taking Precautions: Trevor wears a pager-sized machine 24 hours a day that can give him insulin whenever he needs it.
Constant Struggle
Melanie says the Diabetes Society staff were helpful sources of information and support when Trevor was first diagnosed, assuring her that everything was going to be fine. Her family has continued to use the society's programs and services, and she even refers her emergency room diabetic patients to the society.
The Weinstocks met other families who face the challenge of diabetes at a weekend-long camp in Saratoga last May. The parents learned about the latest developments in diabetes treatments and research, shared information and networked, while the children played sports and made crafts together.
The youth camps are so important for children, Reddan says, because "when they come to the camps they're not the minority, they're the majority."
Together the youth play and learn about their disease and celebrate milestones like administering their first insulin injection without a parent's help, she says.
Trevor had such a good time meeting other children like him with diabetes that he can't wait to attend a Diabetes Society youth day camp in August, Melanie says. It's important to her to meet other parents of diabetic children, as well.
"Nobody else understands what it's like to have a child with diabetes," she says. "You never have a minute's rest from the disease. The thing that really weighs you down is the constantness of it."
Raising a child with diabetes means parents are constantly thinking about how much food and insulin their child has, how much activity they've engaged in, and how high or low their blood sugar is.
"There's always that fear that he'll have a seizure and ultimately brain damage," Melanie says. "I see the complications every day at work. It's such a tightrope that we walk."
She says they also had a scare that their younger child, 2-year-old Kate, had diabetes as well, when they noticed her drinking a lot and wetting through a diaper. She didn't have diabetes, "but it doesn't mean she's out of the woods," Melanie says.
Reddan says that two-thirds of marriages with diabetic children end in divorce because of the enormous strain the disease can take.
But Melanie says she and Steve have been blessed with Trevor, who always asks if something he wants to eat has carbohydrates in it.
"How many 3-year olds know this?" she asks, referring to the age Trevor was when he first learned the word carbohydrate. "We can't believe how he's accepted things. He doesn't know any better. He just views it as a part of himself."
For more information about the Diabetes Society call, 408.287.3785, or visit www.diabetesscv.org. For more information about Taste of Willow Glen call Marketing Maniacs, 408.280.0435, or visit www.tasteofwillowglen.com.
Willow Glen, California Since 1992
