Type 1 diabetes patients encouraged by medical advances

Zoe Pukas, 7, unwraps a snack after reattaching her insulin pump after gymnastics class. Zoe, the daughter of John and Heidi Hart Pukas of Palm Harbor, has Type 1 diabetes. Her blood sugar must be checked 10 to 12 times a day, and she has to keep track of everything she eats.

JIM DAMASKE | Times

Zoe Pukas, 7, unwraps a snack after reattaching her insulin pump after gymnastics class. Zoe, the daughter of John and Heidi Hart Pukas of Palm Harbor, has Type 1 diabetes. Her blood sugar must be checked 10 to 12 times a day, and she has to keep track of everything she eats.

PALM HARBOR

Gary Kleiman held his audience in rapt attention, talking about the days when he didn't always have to know where the nearest Coke machine was.

He didn't have to stick himself numerous times a day. He didn't have to carry around an insulin pump. He didn't have the constant fear of losing control of his blood sugar, and what that could mean to his health and eventually even his life.

"It was the most remarkable experience," Kleiman, 58, told the crowd gathered in the living room of a Palm Harbor home. "To achieve insulin independence was simply amazing."

Every one of the 40 people in the room had either Type 1 diabetes or a child with the condition. Everyone knew Kleiman's insulin freedom — the result of a 2002 clinical trial involving pancreatic cells from a cadaver — was only temporary. Yet they all came to hear his story for the potential it could represent.

"We're cautiously optimistic," said the gathering's host, Heidi Hart Pukas, whose little girl has diabetes. "We see things that get our hopes up."

More than a million Americans suffer from what was once called juvenile diabetes. Just a few generations ago, it was a guaranteed death sentence. Since the discovery of insulin and the advent of ever more sophisticated testing protocols, most Type 1 diabetics are surviving well into adulthood. Yet it still is a daunting diagnosis that means daily, lifelong vigilance, and even then, no guarantees of avoiding bleak consequences.

Researchers are focusing on ways to help diabetics live longer and better. They're also seeking to prevent the condition.

But today's patients and families are dreaming bigger. At age 7, Zoe Pukas has had enough of her diabetes.

"Will I have it when I'm an adult?" she asks her mother.

"I don't know,'' comes the reply.

• • •

Diabetes is a group of diseases that affect how the body uses glucose, its main source of energy. Blood levels of glucose are controlled by insulin, a hormone produced by the pancreas.

Most of the 25.8 million Americans with diabetes have the Type 2 form of the disease, in which the body can't respond normally to the insulin that is produced. Once called adult-onset, this form is often connected with obesity; TV chef Paula Deen recently brought the condition a fresh wave of attention with the news that she has had it for several years and is promoting a drug to treat it.

Far fewer people have the more serious Type 1, in which the pancreas doesn't produce enough insulin.

Unchecked, diabetes causes glucose levels to rise, which can cause extreme thirst, fatigue, increased urination or unusual weight loss.

While Type 2 diabetes is commonly treated with medications, exercise and improved diet, those with Type 1 diabetes must have insulin pumped into their bodies several times a day to control their blood sugar.

Much research has gone into identifying the causes of Type 1 diabetes, with the hope of preventing its onset. The University of South Florida is a major participant in an ambitious study of more than 8,000 youngsters from around the world who have been identified as being genetically at higher risk of getting the disease.

• • •

But what about those who already have it?

For the last couple of decades, scientists have been working on transplanting insulin-producing islet cells from deceased pancreas donors into the livers of adult Type 1 diabetics. The goal: to infuse enough islets to control blood sugar without insulin injections.

But the body tends to reject the cells as foreign invaders. As with all donations, there's a limited supply.

And, as Kleiman learned, the transplanted cells don't live long.

Scientists at the University of Alberta have had better results by using drugs like those that organ transplant recipients use. After a year, 90 percent were insulin independent, and after four years, up to a quarter still were.

"If you look at the data over the last 10 to 15 to 20 years, we went from less than 10 percent success after one year to over 90 percent, and extending to five years or more," said Kleiman, who now is senior director of medical development for the Miami-based Diabetes Research Institute.

But even if the islets could be kept alive, supply would still be a problem. So others are investigating whether pig islet cells, genetically close to human cells, could be used.

Yet another possibility: stem cells. Scientists hope to harness their regenerative power and coax them into making insulin themselves, or somehow revive patients' own insulinmaking capacity.

A study conducted by scientists in China and at the University of Illinois, and published in January in the journal BMC Medicine, found success in a treatment that combined a patient's immune system cells with stem cells from a donated umbilical cord. The treatment decreased many patients' need for insulin.

• • •

Heidi Pukas is hopeful for a day when Zoe will no longer need to have her blood sugar checked 10 to 12 times a day — at school, in the middle of the night, at gymnastics, swim practice. She's hopeful for a day when Zoe won't have to wear an insulin pump around the clock, or take note of everything she eats.

She and her husband keep track of the latest research developments, such as progress in an artificial pancreas project headed by the Juvenile Diabetes Research Foundation.

When Zoe was diagnosed at 11 months, Pukas was pregnant, and she and her husband decided to save some of son Ethan's umbilical cord blood, for the stem cells that might potentially help Zoe. The blood is stored in a facility in Oldsmar. Ethan does not have diabetes.

The couple keep in touch with a network of families of diabetics.

"More parents need to know about what's going on," she said, explaining one reason for inviting the researchers to their home. "The more we know and share in the information, the stronger we can be."

Dr. Henry Rodriguez, medical director of the USF Diabetes Center, said he is often asked by parents of young diabetics about islet cells and stem cells.

What does he tell them?

"I expect that there will be a cure in their child's lifetime," he said. "However, we have to deal with the here and now."

He said a more immediate and attainable goal is finding better ways for diabetics to monitor their blood sugar levels and administer insulin. As one yardstick of progress, he noted that the number of diabetics who carry insulin pumps — which deliver insulin continuously throughout the day using a catheter — has increased from 6,600 in 1990 to more than 360,000 today.

Meanwhile, the Pukas family and others like them say they're grateful for how far science has come — while hoping for more.

Mrs. Pukas recalled one day when Zoe held a sale of her drawings. "She said, 'All money is going for a cure because I hate diabetes.' ''

Richard Martin can be reached at rmartin@tampabay.com or (813) 226-3322.

Type 1 diabetes patients encouraged by medical advances 02/24/12 [Last modified: Friday, February 24, 2012 6:10pm]

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