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Life-Changing Diagnosis: Type 1 Diabetes　By ALIYAH BARUCHIN
Patrick Andrade for The New York Times.
Twin sisters Ali, left, and Marissa Newman at home. After Ali learned she had diabetes, Marissa enrolled in a study of the disease.

In Brief:
Type 1 diabetes most often arises in children or young adults but can strike at any age, with the sudden appearance of symptoms that may be life-threatening.
Close relatives are at increased risk for developing the disease, but onset may require an environmental trigger.
Managing Type 1 diabetes requires frequent daily insulin injections and intensive lifestyle changes.
A blood test can help predict who is at a high risk of developing Type 1 diabetes, and researchers are testing ways to delay or prevent its onset.
On the eve of Rosh Hashana in October 2005, Ali and Marissa Newman and their parents, Stacey and Rick, drove from their home in Scarsdale, N.Y., to Long Island to have dinner with cousins. It was supposed to be a pleasant holiday, a time to be with family and to celebrate the Jewish New Year in temple.
But for Ali and Marissa, 13-year-old twin sisters, the holiday was the beginning of a medical odyssey that would turn their lives upside down. One would learn she has Type 1 diabetes; the other would become the first person enrolled in a multinational study aimed at delaying or preventing the disease in some patients.
The trouble had begun a month earlier, when Ali came home from summer camp unexpectedly thin, having lost about 10 pounds. She had also been unusually tired, falling asleep in the car and on visits to friends’ homes.

Ali’s weight loss was so troubling that her friends and a school nurse had confronted her, wanting to know if she had an eating disorder. Her parents could not stop asking what was wrong; Ali, increasingly frustrated at being accused, could not give them an answer.
The evening after Rosh Hashana, Ali struggled to climb the stairs to the bedroom she shared with Marissa. “I’d go two steps, then stop and take a breath,” she later recalled. Marissa, who had been worried about her sister for weeks, stayed up that night, watching Ali as she slept.
Ali woke twice and went to find her father, who gave her cold medicine and an inhaler to ease her breathing. But the third time she woke, when she said she could not make it down the hall, Marissa told her parents that they had to get Ali to the hospital.
No one knew that Ali had developed Type 1 diabetes. By the time she reached the emergency room at 3 a.m., she was in diabetic ketoacidosis, a life-threatening condition in which extremely high blood sugar causes an imbalance in blood chemicals.
“Her potassium was very low, and her glucose was very high,” said her father, Dr. Rick Newman, a plastic surgeon. “She was in and out of consciousness.”
Ali’s diagnosis sent a shock wave through every member of the Newman family. And it threw Marissa’s future into question: as Ali’s twin, she now learned, she could be at risk of developing the disease. Ninety percent to 95 percent of all cases of diabetes are Type 2, or adult-onset, a disease frequently linked to obesity. But Type 1, known as juvenile diabetes, is not governed by lifestyle. It is an autoimmune disorder in which the body attacks the beta cells in the pancreas that produce the hormone insulin.
Because people with Type 1 produce no insulin, they cannot survive without injecting it before each meal, and they must test their blood several times a day to check their glucose levels.
“It’s not the kind of condition where you just take a pill and sort of forget about it,” said Dr. Natasha Leibel, Ali’s endocrinologist at Columbia University’s Naomi Berrie Diabetes Center in Manhattan. “Managing Type 1 is an incredibly intensive life change.”
The key to preventing Type 1 is genetics.
Everyone with the disease is born with a genetic susceptibility to it, though only a small minority of those with the predisposition actually develop dia...

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