- The Washington Times - Tuesday, June 19, 2001

Summer has arrived and Caitlin Madigan, 12, enjoys a nice break from school with trips to the beaches of Bethany. But if she had a choice, she would much rather take a vacation from her constant companion, diabetes, which hasnt left her side for a single day since she was 5 years old.
"I get so fed up with it, I literally throw the blood test kit to the ground," says Caitlin who lives in Northwest. "Once I broke two insulin bottles."
Every day, Caitlin regularly tests her blood glucose a half dozen times and three times a day she gives herself a shot of insulin.
"Its pretty awful," she says.
There is no cure for Type 1 diabetes, which strikes indiscriminately across the lines of gender, economic standing and race.
To give the disease a face on the political stage, Caitlin and roughly 200 other children with Type 1 diabetes are participating in the Childrens Congress June 24-27, sponsored by the Juvenile Diabetes Research Foundation International, and led by actress Mary Tyler Moore, who was diagnosed with Type 1 diabetes as an adult.
The children will meet with members of Congress to share their experiences of the disease and ask the senators and representatives to appropriate more money for research. Since the last time the children made a pilgrimage, two years ago, there has been a major boost in funding at the National Institutes of Health for Type 1 diabetes.
Foundation representatives would like to think the childrens event had something to do with it, but that is difficult to evaluate, says Nichell Taylor Bryant, spokeswoman for the foundation.
The foundation would also like to see continued stem cell research, which the Bush administration has raised objections about because the research involves embryonic stem cells.
"Having lived with diabetes for more than 30 years, I know all too well the course of this disease and its devastating complications," Miss Moore said in a written statement to The Washington Times. "My sincere wish is that events like this Childrens Congress will bring home to the public and the government the urgency of our need — creating greater impetus to find and fund a cure. …"
Diabetes was about to rob Miss Moore of her eyesight when it was restored with the help of laser surgery.

Understanding diabetes
Four-year old Evan Solomon, who was diagnosed about a year ago, often says to his mother Susan Brusilow-Solomon, "I am not going to have diabetes when I grow up," and it breaks his mothers heart to tell him the truth, "Yes, you will."
She says pediatricians have told her that children who accept and incorporate the disease as a part of their body and speak openly about the condition do better than those who fight and deny it.
"I tell him everyone has things about them that make them who they are," says Mrs. Brusilow-Solomon, who lives with Evan and her husband Steve Solomon in Montgomery County. "You have blue eyes, you have diabetes."
Roughly 1 million Americans have Type 1 diabetes, which requires daily insulin injections because the body isnt making enough insulin or cant use its own insulin adequately. Insulin helps deliver glucose, which we get from food we eat, into the cells of the body to create energy.
Type 2 diabetes, which is about 10 times more common than Type 1 diabetes, can be regulated with diet control, exercise and in some cases oral medication and insulin.
The risk factors for Type 2 are more well-defined and include older age, obesity, a family history of diabetes, physical inactivity and race. Risk factors for Type 1 diabetes include autoimmune and genetic predisposition, but the disease is still a partial mystery to the medical community.
"We know that its an autoimmune condition, but we dont know what the initial trigger is," says Dr. Audrey Austin, a pediatric endocrinologist at Childrens National Medical Center.
Some researchers say viruses like rubella and cocksaki may trigger Type 1 diabetes. Others say pesticides may be implicated.
"But none of those things have been proven," Dr. Austin says.

Planning and treatment
As with most children who face obstacles or have a disease early in life, young diabetics grow up a little faster than their friends.
Jennifer Queenan, 12, who lives with her family in McLean, was considered mature enough about a year ago to use what is called the insulin pump. It is connected to the bloodstream through a thin tube attached to a pump that looks like a pager.
"We had to jump through a lot of hoops to get the pump," says Jennifers mother, Jeri Queenan.
Jennifer had to do a math test and a psychological evaluation to make sure she was ready for the pump, which drips insulin into the bloodstream on a constant basis. The pump has a reservoir of insulin that is filled every two to four days.
There are times when Jennifer has to increase the input of insulin, such as when her blood sugar goes up, which makes her jittery, and her blood sugar goes down, which makes her feel tired and sluggish. She has to be able to figure out how many units of insulin she can give herself at these moments.
"Its not a cure or anything," says Jennifer, who has had diabetes as long as she can remember. — She got it when she turned 3 years old. "But I can eat pretty much anything I want." She has had the pump for about a year.
For families with children with diabetes, one goal is to create an environment in which the child feels like he or she can do anything he or she wants, Mrs. Queenan says. Sometimes creating that environment takes a lot of time and effort.
During the school year, Jennifers class at Langley School in McLean went on a river rafting trip in West Virginia. For most parents it may be a little worrying that their middle-schooler is hundreds of miles away surrounded by classmates and possibly playing tricks on each other.
But for Mrs. Queenan and her husband Charles, the worry was combined with a months worth of planning, telling all the teachers what to do in the case of an emergency, writing three-page memos and making sure that Jennifer was prepared and comfortable.
"But it was absolutely worth it," Mrs. Queenan says. "I want her to know that she can do anything that anyone else can do."

An extra load
Exercise is encouraged for children with diabetes, if monitored adequately, and both Caitlin and Jennifer have followed doctors orders to a T. Caitlin takes ballet and flamenco lessons and has an advanced degree in tae kwon do.
Jennifer bicycles, skis, snowboards and works out with a personal trainer in a gym.
Most of their contemporaries are understanding of their condition, the girls say. And Caitlin, even if she hates being a diabetic, says her condition may lug with it something positive; — it may teach others about being different and carrying an extra load.
"I have been used as a role model in class. Like, look at what Caitlin has to go through every day," Caitlin says.
Dr. Austin sees worried parents and fed-up diabetic children every day. She encourages rigidity in taking the medication and monitoring the disease.
"You can have very positive results," Dr. Austin says. "If you are very regimented, you can live a more normalized life. … All the negatives that can happen with diabetes dont have to happen."
Those negatives include heart disease, blindness, kidney failure, and lower-extremity amputations.
Dr. Austin understands her patients frustrations, especially the teen-agers who may have restricted their diet and injected insulin for a decade or more. Now they want to be free to eat and drink what they please and to spend time away from home.
"I tell them, 'You are allowed to get fed up with it, but you are not allowed to neglect it, " she says.
Mrs. Brusilow-Solomon has started a play group for young children with diabetes. For more information, contact her at solomon@proskauer.com.

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