Tens of thousands of children are diagnosed with type 1 diabetes each year in the United States. This autoimmune disease is chronic and demands round-the-clock monitoring. For caregivers, learning to how to treat this condition is overwhelming. For children living with the disease, the demands can be terrifying.
When eight-year-old Elle Shaheen was diagnosed with type 1 diabetes, she and her mother Stefany were suddenly faced with new obstacles and unpredictable challenges. Stefany dedicated herself to learning everything she possibly could about diabetes care. Elle was willing to try anything to make life better from groundbreaking medical research trials to a novel approach related to managing nutrition and exercise. After five years, Elle found a new source of strength from a highly unexpected source.
Elle now lives with and loves Coach, a medic-alert service dog who has provided invaluable reassurance with his ability to detect changes in Elle’s blood sugar often well before she feels the symptoms of either a high or low blood sugar. Staring in the face of a lifetime of hardship, Elle and Coach prove to be a dynamic duo, and an inspiration for those seeking care for type 1 diabetes.
Stefany Shaheen recently sat down with The Waiting Room Magazine to discuss her and her daughter Elle’s journey, struggles, and successes with diabetes care. Previously known as juvenile diabetes, type 1 diabetes in children can be extremely challenging. The chronic nature of diabetes means that Elle and Stefany never get a break from the demands of keeping blood sugars in range so that Elle can stay healthy and avoid serious complications. Living with such a serious condition leaves little room for error, says Stefany, and the pressure weighs heavily on her and her daughter each day.
Elle and Stefany were introduced to diabetes alert dogs at the Juvenile Diabetes Research Foundation Children’s Congress. After being discouraged by research which led her to believe she’d have to pay a staggering amount for medic-alert dog care, she found CARES, Inc. Based in Kansas, the organization partners with correctional facilities for dog training, which keeps the cost of the dogs low for their prospective family. After witnessing one of these dogs alert a little girl and her parents to a low blood sugar in the middle of a Senate hearing room, Stefany knew that she needed to explore this option for Elle.
After some skepticism and much discussion, Stefany and Elle warmly welcomed Coach into their lives.
It was love at first sight—Elle knew in an instant that Coach was meant to be hers. Since his adoption into the Shaheen family, Elle has been able to manage her treatment with more independence than ever. The dynamic duo is inseparable. Coach’s assistance is essential in helping Elle catch highs and low, and Elle’s self-monitoring is essential in her role as Coach’s trainer. Elle is empowered and flourishing. As Stefany says, “Coach does far more to take care of Elle and me, and our family, than we could ever do for him.”
Stefany continues to be inspired by her one-of-a-kind experience as a diabetes caretaker. Her journey has led her to create Good Measures, a new approach delivering “timely, highly personalized Registered Dietitian services that combines the expertise of a Registered Dietitian with the power of an innovative digital platform.” Good Measures is unique in that it combines state-of-the-art technology with Registered Dietitians and Certified Diabetes Educators--when and where the person needs the assistance, eliminating guesswork and providing an individualized experience.
Upon Elle’s diagnosis, Stefany struggled to find nutrition information that could be trusted when helping Elle figure out how much insulin to take. Each carbohydrate made a difference, and Stefany searched far and wide for tools that could help. She and Elle craved personalized suggestions and reinforcement--not just from anybody, but from people who understand nutrition and its relationship with diabetes care. People they could trust.
Together, Stefany and her business partner, George Bennett, assembled a team of registered dietitians, certified diabetes educators, mathematicians, engineers, exercise physiologists, other clinicians, and organizational leaders.
According to Stefany, Good Measures isn’t limited to just diabetes care. It can be useful for anyone who is simply looking to manage his or her own health. Utilizing a convenient digital platform (available on both smartphone and desktop), the individual is able to receive personalized meal and snack suggestions, based on their highly personalized nutritional needs, food choices, and eating habits. Those supported by Good Measures also receive unique individualized support from the Registered Dietitians via email, text, and telephone. Good Measures is helping people feel better by providing highly personalized support when and where it is needed.
Stefany and Elle will continue working to make something positive come from a diagnosis that can be devastating. Together they will keep pushing forward with an openness to trying new treatment options and helping make those advancements possible until a cure is found.
Be sure to look out for Stefany Shaheen’s New York Times bestselling book, Elle & Coach: Diabetes, the Fight for My Daughter’s Life, and the Dog Who Changed Everything, written with co-author Mark Dagostino, available in paperback, hardcover, and ebook from Hachette Book Group.