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THE EDMONTON PROTOCOL.(Type 1 diabetes )

Publication: The New Yorker

Publication Date: 10-FEB-03

Author: Groopman, Jerome
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COPYRIGHT 2003 All rights reserved. Reproduced by permission of The Condé Nast Publications Inc.

One day in 1972, when Dana Shields was fourteen, she became so thirsty that she found herself gulping water from a faucet, unable to get enough. Soon afterward, she started to lose weight; within weeks, she had dropped about twenty pounds. At the time, Dana was competing for a place on her high school's field-hockey team, and she attributed these symptoms to a rigorous training schedule. She cut back on exercise, but she could not gain weight. One afternoon a few weeks later, she ate a brownie, drank some Pepsi and some chocolate milk, and started to vomit. Her parents took her to the emergency room. Test results showed that Dana's blood sugar, or glucose, was at more than six times the normal level. She had developed diabetes.

Dana (this is not her real name) had Type 1, or juvenile, diabetes, an autoimmune disease that occurs, in most cases during childhood, when T cells attack and destroy the islet cells in the pancreas, which produce insulin. (Type 1 diabetes is entirely different from Type 2 diabetes, in which the body continues to produce insulin but no longer responds to it; that disease, which generally develops in adulthood, can often be controlled by regulating glucose levels through diet.) Without the ability to produce insulin, a person cannot properly metabolize glucose, and toxic acids accumulate in the blood. Over time, serious complications may arise, among them blindness, kidney failure, extensive nerve damage, and accelerated atherosclerosis, which can lead to a heart attack or a stroke. There is a genetic predisposition for Type 1 diabetes, and thirty thousand new cases are diagnosed in the United States each year. There is no known cure.

Dana chafed at the onerous regimen she was put on: she had to test her blood sugar every few hours, and give herself multiple insulin injections to keep her glucose levels within a normal range. When she left for college, she became careless about her health. Her blood glucose often rose out of control, and she spent many weekends in the infirmary being treated for dehydration, which accompanies high blood-sugar levels. Four years after graduating, Dana, a slim woman with blond hair and blue eyes, married. At twenty-seven, she decided to have a baby, and consulted an obstetrician who specialized in high-risk cases. Shortly after the child was born, she developed retinal damage, and had to undergo a series of laser treatments to prevent blindness. "I finally grew up and realized that I needed to deal with my illness," she told me not long ago.

Dana began to check her blood-sugar level every few hours, adjusting it with a shot of insulin. But, even with such vigilant attention, a diabetic cannot manually match the second-by-second release of insulin from the islets of the healthy pancreas, which keeps the body's glucose level within a normal range, and Dana's condition continued to worsen. The nerves that control the stomach and the intestine began to malfunction, so that she could not digest an ordinary meal. When she became pregnant a second time, her kidney function deteriorated. She delivered a healthy child, but her doctors concluded that she would eventually require dialysis and a kidney transplant. Seven years later, she underwent a transplant, which improved her health, but she was obliged to take strong--and potentially dangerous--immunosuppressive medications to ward off rejection of the new organ.

Dana, who now runs a family business in upstate New York, told me that she felt imprisoned. "Not a moment of the day went by when I didn't think about my disease, how each activity--whether it was eating or jogging or sitting through a long movie--could affect my blood sugar and the amount of insulin I needed to inject," she said. She expected more complications in the future, and she knew...

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