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Living with a deadly disease

Petaluma resident Anastasia Schuster recently found her family's life turned upside down when her 14-year-old son was diagnosed with type 1 diabetes. The diagnosis only came after a heart-pounding trip to Oakland Children's Hospital to treat a life-threatening condition brought on by the disease going undiagnosed.

"I found out the hard way," she said, explaining that in retrospect, her son was showing warning signs of diabetes — extreme thirst, rapid weight loss, frequent urination, and extreme hunger — but that with no knowledge of diabetes, it was easy to attribute the symptoms to teenage growing pains. Schuster now wants to spread as much information about diabetes as possible, saying, "I keep thinking, what if there are other (undiagnosed) kids out there?"

Type 1 diabetes, which affects about 3 million Americans, is a chronic, potentially life-threatening condition where a person's immune system attacks insulin-making cells in the pancreas. Insulin is needed to deliver sugar to the body, and without it, serious medical problems arise. Children are born with a genetic predisposition to get the disease, which is triggered by unknown causes. There's no cure for the condition and once diagnosed, a patient is permanently dependent on insulin injections in order to regulate blood sugar. Type 1 diabetes is often confused with the far more common type 2 diabetes, for which one of the primary risk factors is being overweight or obese. Unlike type 1 diabetes, type 2 can often be managed by diet and exercise. It is considered a nationwide epidemic, with the number of youth being diagnosed on the rise.

In contrast, many think of Type 1 diabetes as a very rare disease. However, occurrences of this condition also appear to be on the rise in young children. A recent study by the University of Philadelphia showed that the number of children under age 5 with type 1 diabetes had increased by 70 percent between 1985 and 2004 — with no clear cause determined.

"It used to be that nobody knew anybody else with diabetes," said Schuster, whose brother-in-law was diagnosed with type 1 diabetes more than 50 years ago. She said at the time, he knew almost no one else who had it.

But once Schuster's son was diagnosed, she quickly found other mothers to turn to for advice. A friend, whose son was diagnosed with type 1 when he was in fourth grade, provided the Schuster family with a diabetic gift basket, complete with a digital scale to measure food. Her son included some of his favorite diabetic-friendly snacks.

She and her son found another resource in Petaluman Erica Burns-Gorman, whose daughter was diagnosed with type 1 diabetes about four years ago when she was 15. As with Schuster's son, Burns-Gorman's daughter was in critical condition by the time doctors figured out what was wrong.

"It was a terrible shock," said Burns-Gorman, adding that there was no family history of the disease. She said that in addition to constantly monitoring food intake, blood sugar levels and insulin, one particular challenge for her daughter has been the negative reaction of some of her friends. "Some people were really cruel, saying it must have been something she did to herself," she said.

It's a problem that all the families interviewed for the article had experienced. Each of them told stories about classmates or parents judging their family because of a diabetes diagnosis, assuming poor dietary choices were to blame.

One source of information and comfort for many parents in Petaluma and beyond is a blog, Our Diabetic Life, which is written by Petaluma resident Meri Schuhmacher.


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