Type 1 diabetes in adolescents may be as chronic as it is common, but the region’s medical experts say it doesn’t have to be scary.
The day Mary Worth received the life-changing news, she was just 5 years old. “I stayed in the hospital for three nights, and my mom went through the training—administering the practice shots to an orange and learning what my life was going to look like going forward,” she says. “I was so young.”
Now 17, Mary recalls a trip to Children’s Hospital of Philadelphia for spring break in lieu of a planned family vacation in Florida. Everyone in her inner circle was struggling to navigate the new normal after her Type 1 diabetes diagnosis. “I know my mom was trying to make it less scary for me,” she says.
Mary’s mom, Molly Burke, became her daughter’s in-home nutritionist, learning how to count carbs, manage portions, fill a syringe from a vial without air bubbles, and more. “I’m not a science person, but I quickly got an education in what it felt like performing a nurse’s duties,” says Burke, who lives in Narberth. “It was a whole new world of caring for my child.”
Diabetes is one of the most common chronic conditions in the United States, affecting an estimated 193,000 children and teens under age 20—and that number that continues to rise. Diabetes prevents the body from properly metabolizing glucose for fuel in the body’s cells. Symptoms include dry mouth, excessive thirst and frequent urination. Insulin, a hormone made by the pancreas, is needed to get the glucose into the cells.
Type 1 diabetes has a genetic component and can be diagnosed early in life or in adulthood. With this chronic disease, insulin-producing beta cells in the pancreas are mistakenly destroyed by the body’s immune system. The causes aren’t fully known, and there’s currently no cure.
Treatment aims at maintaining normal blood sugar levels through regular monitoring, insulin therapy, a healthy diet and exercise. That can be a daunting task for a patient who’s barely learned to read. So the onus falls on parents. “I encourage families to make and record observations about blood sugar patterns with regard to certain foods, exercise, time of day and setting,” says Dr. Martha Bardsley, a Narberth-based pediatric endocrinologist. “If you don’t record your observations, it’s easy to forget them. Over time, these observations make it easier to decipher the trends and make adjustments to manage blood sugars.”
Technology has improved the quality of life for those living with diabetes. Type 1, in particular, has become more manageable with insulin pumps and continuous glucose monitors that send data to a cellphone. If a patient isn’t getting enough insulin, the body can go into diabetic ketoacidosis, a potentially deadly crisis state that can require hospitalization.
Type 1 diabetes treatment aims at maintaining normal blood sugar levels through regular monitoring, insulin therapy, a healthy diet and exercise. That can be a daunting task for a patient who’s barely learned to read.
When it comes to diagnosing the disease, parents should “rely on intuition,” says Dr. Margarita Sergonis, a pediatrician at Bryn Mawr Hospital. “You know your child the best. If you don’t think something is right, ask for more testing. Feel empowered to know the symptoms. The earlier you diagnose this, the better off your child will be. You definitely don’t want to take a wait-and-see attitude when warning signs come your way.”
Over the years, Burke’s efforts to ensure increased independence for her daughter have paid off. During two summer stays at a sleep-away diabetes camp in Massachusetts, Mary developed a kinship with those who share her condition. “We all go through periods when it gets very overwhelming,” says Mary, who’s a senior at Harriton High School. “Find your community of people who can support you. It’s easier to process when you know you’re not doing this alone.”
For her part, Mary’s mother refuses to accept school policies that could impact her daughter’s safety and wellbeing—and that will continue in college. “I’ll need to know the number of the RA. We need to have an emergency plan,” Burke says. “I’ve seen a lot of growth in terms of Mary’s self-management and independence. She does an amazing job. I know I have to continue to back off—which can be hard for any parent.”
But, as her daughter notes, everyone is different. “Don’t put extra pressure on yourself or your family to manage it in a certain way,” she says.
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