Aurora Sisalli plans to join JDRF's “T1D for a Day...

Aurora Sisalli plans to join JDRF's “T1D for a Day Text Challenge” to help support her three siblings who have type 1 diabetes (T1D). Credit: Handout

Aurora Sisalli, a 10th-grader who has three siblings living with type 1 diabetes (T1D), plans to join this month’s “T1D for a Day Text Challenge” to help her understand the challenges her siblings face on a daily basis.

“I’m doing it because I want to support my three siblings. It is nothing compared to what my siblings go through each day, but it will give me a deeper understanding of what they have to do to stay health," she said.

November 1 is National Type 1 Diabetes day, and the Juvenile Diabetes Research Foundation (JDRF),  a nonprofit that funds type 1 diabetes research, is sponsoring the text campaign to help people who don’t have T1D understand the day-to-day routine of a person living with it. Participants will receive multiple text messages over 24 hours from professional snowboarder Sean Busby, who has lived with T1D for nine years, according to the JDRF.

Aurora, who doesn’t have T1D, said of her siblings, “I watch them constantly prick their fingers for blood glucose readings, count carbs, and have to remember to take snacks and their meter supplies everywhere. I watched my one sister pack an entire suitcase filled with supplies as she went off to college, which gave her less space for her clothes. … these are challenges nobody thinks of.”

Marie Cimaglia, executive director of the Long Island Chapter of  the JDRF in Melville, said, “The more people who understand the rigors of type 1 diabetes (T1D) management, the more people who will be compelled to support funding for T1D research, which benefits both children and adults living with T1D. Deeper understanding among school staff and classmates can also serve to create a more nurturing environment for kids living with T1D.”  During the text challenge, she said, “you receive numerous messages throughout a 24-hour time period. The messages mirror a day in the life of someone with T1D. For example, they will text at 6 a.m. stating it is time to take a blood test.” According to the JDRF's website, Busby’s “messages will show you what it’s like to manage the blood glucose testing, insulin injections, and dietary choices that T1D requires every day.”

As a parent of a child with T1D, Larry Wald, also the Long Island president of the JDRF chapter, said, "T1D day will really remind me of why we need to continue to search for a cure while helping those currently afflicted by this disease." His daughter Samantha was diagnosed in 2001,  just before her 8th birthday.  "As a parent , we see what see what she goes through on a daily basis, and every time we she her prick her finger to test her blood,  it reminds us of T1D. …  By experiencing this for myself,  it may give me a better understanding of what she physically goes through on a daily basis."

Local JDRF chapters "are using their local relationships to complement the national push. We hope to have thousands of children participate,” Cimaglia said, adding that the JDRF is working with schools for students to take on this challenge on Friday or any day in November, which is National Diabetes Awareness Month. Nov. 14 is World Diabetes Day.

The campaign's mission, Cimaglia said, is to let people know that “type 1 diabetes requires 24/7/365 management, and that,  while people living with T1D can live very full lives, T1D demands constant attention and creates many challenges that people with T1D need to overcome on a daily basis. People living with T1D deserve to have access to better treatments and someday a cure for T1D, and need increased support to make this happen.”

Nationally, more than 15,000 children are diagnosed with T1D each year, she said. “The prevalence of T1D in people under age 20 in the U.S. rose by 23 percent between 2001 and 2009.” Said Cimaglia, “Living with T1D is a constant challenge. People with the disease must carefully balance insulin doses [either by injections multiple times a day or continuous infusion through a pump] with eating and other activities throughout the day and night. They must also measure their blood-glucose level by pricking their fingers for blood six or more times a day. Despite this constant attention, people with T1D still run the risk of dangerous high or low blood-glucose levels, both of which can be life-threatening. People with T1D overcome these challenges on a daily basis.”

For more information on how to sign up for the text challenge, visit jdrf.org/blog/2013/take-the-t1d-for-a-day-text-challenge

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