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Living with a deadly disease

Meri Schuhmacher, center sits with her sons (from left) Ben, 11, Jack, 15, Luke, 9, and Max, 17. Ben, Jack and Luke have type 1 diabetes and use a glucometer and lancet to check blood sugar levels.

John O'Hara/ For the Argus-Courier
Published: Tuesday, February 19, 2013 at 10:00 a.m.
Last Modified: Thursday, February 14, 2013 at 1:59 p.m.

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.

Facts

Fabulous Women celebrate the Schuhmacher family

Described as an event for adults, it will take place from 6 to 9 p.m. on Friday, Feb. 22 at the Petaluma Valley Athletic Club at 85 Old Corona Rd.
Participants are encouraged to bring a food or beverage to share.
To learn more, visit petalumawomen.com.

“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.

Schuhmacher faces even greater challenges than most — three of her four sons have type 1 diabetes. In addition, last year, she lost her husband of nearly 20 years, Ryan to cancer, when he was just 41. The loss was devastating for the family, and also left them without a full-time wage earner.

Schuhmacher said one misconception she would like to do away with is that type 1 and type 2 diabetes are essentially the same thing, and that type 1 is brought on by obesity or unhealthy eating.

“It isn't the public's fault there are so many misconceptions, as the media gets it all wrong sometimes too,” she said. “We get comments that if we changed the boys' diet, went off gluten, or added cinnamon to their oatmeal, things would change. Their bodies don't make insulin anymore. Nothing can change that.”

Schuhmacher's boys must check their blood sugar about eight times a day, starting when they wake up in the morning. They call home during their snack break and continue checking their blood sugar throughout the day. Nighttime is when Schuhmacher's real work kicks in. Blood sugar is prone to fluctuate at night, and if it dips too low, it can pose immediate danger, resulting in seizures, comas and even death. She sets her alarm for 1 or 2 a.m. to check blood sugar levels; then sets it again depending on where the levels are. “On a bad night, the alarm is reset every hour,” she said. “On a good night, I sleep from midnight to six a.m. This disease doesn't sleep.

“That's why reaching out to a broader community brought me peace,” Schuhmacher said. Since 2009, Schuhmacher has maintained a well-read blog on life with diabetes. It allows her to connect with other parents going through similar challenges, including late night checks, carbohydrate counting and insulin pump set changes.

“People finding (the blog) makes me happy, because they are finding they aren't alone in all this, and that makes all the difference” she said.

The Schuhmachers' story has inspired those beyond the diabetic community as well.

“I love that in the middle of her daily challenges, she's able to blog, give back to the community,” said Krista Gawronski, founder and organizer of the Petaluma nonprofit the Fabulous Women.

After learning about Schuhmacher's situation, the Fabulous Women decided to hold an event in her honor, in part to fundraise for the family but also to show support and raise awareness about type 1 and type 2 diabetes.

“To hear Meri's story, I can't imagine what it would be like to lose a husband and live with the daily challenges of diabetes,” said Gawronski, whose father has diabetes.

“We thought it would be great to start out the new year with a piece of education we can pass on,” she said. “Most of us don't know what it's like to live with type 1 diabetes, but there's the potential for everyone to have type 2 diabetes. There's an educational message everyone can take away.”

(Contact Jamie Hansen at ja mie.hansen@arguscourier.com.)

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