Submitted by admin on Fri, 2005-10-07 22:00. ::
(KRT) - Megan Rapee proudly holds out her finger tips for inspection. Her middle, ring and forefinger tips are calloused and blistered with scabs from needle pokes.
All three Rapee girls have Type 1, or juvenile, diabetes. Their scars are the marks of the constant vigil they must keep on their blood-insulin levels.
Several times a day, every day, the girls either poke their fingers or have their parents do it for them. Before they eat, exercise or sleep, they take a dab of blood, touch it to a strip of paper, insert the strip into a cell-phone sized monitor and wait five seconds to see how their body is behaving.
Soon, she will begin receiving her insulin through a pump connected to her body (Hayley already has one), which will trickle in insulin without the need of shots.
In a typical day they'll monitor each of the girls' blood-insulin levels a total of about 24. That's about 6,500 finger pokes a year. And they'll administer around 10 shots a day - about 3,500 shots per year.
To understand not only what is happening to the Rapee family, but also why, researchers at Children's Hospital and the Medical College of Wisconsin have joined a consortium of scientists to analyze the DNA of siblings of diabetes patients. Why do some siblings get it but others don't?
Rapee doesn't know the answer, but she laughs a bit while thinking about a time eight years ago when it was first determined one of the girls had the disease, and how at that time, she couldn't imagine working with one child who had the disease.
"But it's really not about the number of kids" you have who have this disease, she said, insisting that she doesn't work harder or suffer more than the mother who only has one or two kids with the disease. "It's all relative."
"She was scarily thirsty," said Rapee, who noticed that Megan would guzzle enormous amounts of liquids, with what seemed an unquenchable thirst.
"She had these red splotches all over her face," she said, later learning that those splotches were the war zones of Megan's body where the sugar was trying to escape.
By the time Megan's doctors realized what was wrong, her insulin levels had climbed to 1,050 milligrams per deciliter - a dangerously high level.
"We were shocked," said Rapee, who knew virtually nothing about the disease - neither she nor her husband, Edward, have the disease, and as far as she knows, nobody else in their extended families do either.
Indeed, if one sibling has the disease, there's only a 3 percent to 4 percent chance another will, too, said Ramin Alemzadeh, a program director of diabetes at Children's Hospital of Wisconsin and professor of pediatrics and endocrinology at the Medical College of Wisconsin.
Because the body can't use the sugar it takes in, glucose is excreted through urine and lost. Weakness, weight loss, excessive hunger and thirst are symptoms of a diabetic.
Members of a family with a history of Type 1 diabetes are at higher risk for getting the disease and certain geographic populations have higher incidences than others.
Finland has the highest rate of Type 1 diabetes in the world, with about 50 out of every 100,000 people showing the disease. Research shows variability even within the country: Rural populations have higher incidence of the disease than more urban centers.
In the United States, where the likelihood is about 15 in 100,000, there is variability, too. Southeastern Wisconsin has the third-highest rate of Type 1 diabetes cases, said Alemzadeh, trailing South Dakota and the Virgin Islands.
"There are a lot of Swedes and Scandinavians" in the Milwaukee area, said Alemzadeh, adding that Michigan's Upper Peninsula has a high incidence, too. "The UP is full of Finns."
To figure out the genetic components of diabetes, Alemzadeh and others at Children's and the Medical College have joined the Type 1 diabetes Genetics Consortium, a group that will collect genetic data on Type 1 diabetes patients and their siblings.
"Isn't it odd that even though identical twins are genetically identical, if one has the disease the chances that the other will get it too are only 30 to 40 percent?" asked Alemzadeh.
Whether this has to do with the age of the mother - older women are more likely to have Caesareans - or the lack of exposure to hardy birth canal flora is not known, Alemzadeh said.
Alemzadeh said that in 1985, about 18.8 of 100,000 children in southeastern Wisconsin had the disease. In 2004, the number had climbed to 40.3 out of 100,000. Correlated with this increase is a rise in childhood obesity.
Unlike Type 2 diabetes, which has been associated with weight gain, Type 1 historically has not been considered a weight-related disease. However, researchers are beginning to wonder if added weight, in some children, may be putting a greater burden on the pancreas.
Chosen to be the "ambassadors" from Wisconsin, the Menomonee Falls family went to Washington this summer on behalf of the Juvenile Diabetes Research Foundation.
Rapee said that although her daughters will face challenges as they grow, the disease has given the girls a sense of empowerment, empathy and understanding that children their age often don't have.
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