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PORTSMOUTH — At just 11 years old, Elle Shaheen is faced with a heavy responsibility, an understanding beyond her years and a bright future, despite the disease she lives with and monitors daily.
Four years ago, Elle, of Portsmouth, was diagnosed with Type 1 diabetes. She said the questions and misconceptions she often hears are frustrating and show many do not understand the disease and its implications.
That’s why, beginning today and through Wednesday, Elle will join her mother, Stefany Shaheen, daughter of U.S. Sen. Jeanne Shaheen, in Washington, D.C., for the Juvenile Diabetes Research Foundation Children’s Congress 2011. The event, held every other summer to coincide with the new Congress, aims to raise awareness about Type 1 diabetes, clarify misconceptions and increase congressional support to develop a cure.
Elle served as a delegate at the 2009 event and, because of their involvement then, Stefany and Elle were asked this year to be the Chair and Chair-Kid of the 2011 Congress.
“The misconception is, as long as you’ve got insulin, you’re OK,” Stefany said. “What we work hard to do is to shine the light on challenges of what it really looks like to live with diabetes. It’s quite an honor, because I think the event is remarkable. It is consistently acknowledged by members of the House and Senate as a very effective effort.”
Congress joins 150 Type 1 diabetic children, ages 4 to 17, representing all 50 states and the District of Columbia as delegates, as well as eight honorary international delegates. JDRF International Chairman Mary Tyler Moore will again lead the way for the children during the Congress, and Supreme Court Justice Sonia Sotomayor, actor Kevin Klein, musician Crystal Bowersox and others will talk about life with diabetes.
Hearing from adults who have lived with Type 1 diabetes and still achieved their dreams is inspirational for Elle, who aspires to be a Broadway performer. In 2009, when she was a delegate at the Congress, Elle met Nick Jonas, a musician and vocal advocate for diabetes who, as a performer, deals with the same issues Elle will face in pursuing her dream.
She isn’t letting Type 1 diabetes hold her back. This summer, Elle is playing a munchkin in “The Wizard of Oz” at Prescott Park and has performed with Seacoast Repertory Theatre and Great Bay Academy of Dance.
Elle was diagnosed with Type 1 diabetes at age 8, over a Thanksgiving holiday when Stefany observed unusual behavior in her daughter, including mood swings; irritability after meals, particularly breakfast; and excessive thirst. Stefany recognized the symptoms from her brother-in-law, who is a Type 1 diabetic, and sought answers.
“In some ways, we just wanted an answer; we just wanted to know what was going on, and because we had watched my brother-in-law adjust, it wasn’t as mysterious as it is for other people,” Stefany said.
But still, she said, it was horrifying.
“The first six weeks after her diagnosis, it wasn’t so much the horror of coming to terms with that she was going to have to live with this, but keeping her safe,” she said. “The longer you live with the diagnosis, you realize the ramifications of it and how hard it is. You can’t possibly appreciate that when you first get the news.”
Type 1 diabetes is usually diagnosed in children and young adults whose bodies do not produce enough insulin, the hormone needed to convert sugar, starches and other food into energy.
Elle monitors her insulin, glucose and carbohydrates through a blood glucose meter and insulin pump that she wears full-time as it injects insulin throughout the day. She tests her blood sugar through a prick of her finger 10 to 12 times a day before and after meals and activity, and must monitor her carbohydrate intake, as she cannot have more than 5 grams without needing more insulin.
“It’s hard sometimes,” Elle said. “I’m the only kid in my whole school that has diabetes, and everybody can go outside and play and I have to test my blood sugar and see if I’m low. If I am, I have to stay in the office, eat sugar and retest.”
What at times can be the hardest part, Elle said, is dealing with misconceptions.
“There’s been times when people think it’s contagious. It’s a problem with your pancreas, so it can’t really be contagious,” she said, making a perplexed face. “A lot of people ask questions, and I don’t want to have to talk about it. I don’t want it to take over everything and I don’t want it to get in the way of stuff, either.”
Elle and Stefany hope they can advocate for Congress to fund continued testing of the “artificial pancreas,” which will join the insulin pump and blood glucose meter in one machine that will help regulate low blood sugars on its own. These are currently two separate machines and Stefany and Elle must work together at all hours of the day, even the middle of the night, to regulate her blood sugar.
“The technology is very promising and it would revolutionize her life,” Stefany said.
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