PORTSMOUTH — Memorial Bridge and landmarks across the world lit up blue Saturday in recognition of World Diabetes Day, to raise awareness of a disease that strikes all populations and age groups.
One Portsmouth family has been living with diabetes for 13 years.
Elle Shaheen, daughter of Stefany Shaheen and Craig Welch, and granddaughter of U.S. Sen. Jeanne Shaheen, was diagnosed when she was 8. Stefany’s 2015 New York Times bestseller “Elle and Coach” is not only about the family’s experiences navigating diabetes, but also about Coach, the dog who can sense Elle’s blood sugar levels and alert her to life-saving changes.
According to the Centers for Disease Control and Prevention, 34.2 million U.S. adults have diabetes, and 1 in 5 of them don’t know they have it. It is the seventh leading cause of death in the United States. Diabetes is the number one cause of kidney failure, lower-limb amputations and adult blindness, and in the last 20 years, the number of adults diagnosed with diabetes has more than doubled.
There are three main types of diabetes, types 1 and 2, and gestational diabetes (during pregnancy).
World Diabetes Day (WDD) was created in 1991 by the International Diabetes Federation and World Health Organization in response to growing concerns about the escalating health threat posed by diabetes.
WDD became an official United Nations Day in 2006 with passage of UN Resolution 61/225. It is marked every year Nov. 14, the birthday of Sir Frederick Banting, who co-discovered insulin along with Charles Best in 1922. WDD is the world’s largest diabetes awareness campaign reaching a global audience of over 1 billion people in more than 160 countries. The campaign draws attention to issues of paramount importance to the diabetes world and keeps diabetes firmly in the public and political spotlight (www.worlddiabetesday.org).
Elle is a senior at Harvard. She has type 1 diabetes, a chronic, autoimmune disease that means she will have to monitor her blood sugar levels for the rest of her life. It should not be confused with type 2, which can sometimes be managed with diet and exercise.
As a college student and adult, Elle is able to manage her condition. She knows when she should check her levels and how to calculate the amount of insulin she needs each day.
And she has Coach, a 9-year old yellow Lab, her medical service dog. The two are bonded and may be part of the reason the Shaheens could let her go off on her own.
“When Elle’s blood sugar level is either high or low, Coach is able to detect the change using his sense of smell,” Stefany said. “He paws at her leg or will circle around her to get her attention. He continues to ‘alert’ until he is rewarded with a treat.”
The journey is a bit easier now, with medical advances assisting in how Elle manages her diabetes. It’s part of Elle’s life forever but learning how to be a family with diabetes was a long journey.
Elle was diagnosed Nov. 28, 2007. Each year that passes is referred to by the family as her “diaversary.”
“Diabetes is sadly a far too common disease, one that never goes away,” Stefany said. “Type 1 used to be called juvenile diabetes because people thought it only manifested in small children. Now, we know it can happen at any age. Elle has an uncle who was diagnosed in his 20s, so there is the genetic component.
Stefany, Craig and their three other children, Annah, Caraline and William, do not have the disease. The children are tested regularly for the genetic marker that signals a possible onset.
In her book, Stefany talks about changes in Elle. Initially, they were chalked up to “growing pains” but before long, it became clear something was wrong. Elle had mood swings, a frequent need to urinate and was losing weight but eating regularly.
“I don’t remember a lot of fear,” Elle said. “I was a kid. Now diabetes feels like such a part of my life because it’s how I manage my day. I remember learning to give myself shots, practicing on an orange, and on a teddy bear the doctors gave me that has the places I could give a shot on it.”
Elle is a theater student at Harvard, although now, due to COVID, her classes are online. She said she hopes she can go back and finish her last semester. Coach goes with her.
Her typical day is incredibly busy.
“I have been able to rent dance studio space,” Elle said. “That makes me feel somewhat normal. I don’t need to wear a mask. I can rehearse and perform. Then I take classes online from about 11 a.m. to 7:15 p.m. I am helping with a virtual musical at my school, so we work on that until about 11 p.m. Then I do homework. Then I sleep.”
“Imagine the leap of faith it required to let her leave home,” Stefany said. “We are so proud of her. And there have been advances that make it somewhat easier to manage. Though she has to be aware of it every day. The symptoms are insidious, and changes can happen so rapidly, the highs and lows that are life threatening.”
Stefany said Elle used to have to prick her finger 8 to 10 times a day and use 6 to 8 syringes of insulin. Now she has a glucose monitor and an insulin pump.
“I check my levels on my phone,” Elle said. “I administer insulin on my phone, too.”
Stefany said Elle still needs to calculate her required insulin, which is based in part on what she eats each day. Elle needs to careful about the coronavirus.
“I am not at a higher risk than others to catch COVID” Elle said. “But, if I do catch it, I might have a harder time with the virus.”
The Shaheens work closely with the Joslin Diabetes Center in Boston, even serving as ambassadors at the Children’s’ Conferences in Washington, D.C, where shared stories help educate legislators to the needs of people living with diabetes.