Every day, after Beth Frame says good morning to her son Alex, she asks him the same question:
“What is your number?”
His number is his blood sugar level. Alex has Type 1 diabetes. A glucose monitor on his right arm checks his blood sugar. If it gets too high or too low he and his parents receive an alert on their cell phones.
The questions only get more complicated as the day progresses. What will Alex eat for breakfast? Carbohydrates affect the body’s blood sugar more than any other nutrient so they must be counted. Will Alex go to P.E. class? If so, should he bring extra snacks? Should his lunch have more carbohydrates? All of this is before Alex, 13, leaves for school.
On Sunday, almost a year to the day he was diagnosed, Alex led a team of 60 relatives, friends and classmates from Gesher Jewish Day School in Fairfax on a two-mile walk to raise money for diabetes research.
The One Walk, organized by JDRF, a global organization that researches Type 1 diabetes, took participants from the Washington Monument to Capitol Hill and then back again. It raised more $660,000, according to JDRF.
Type 1 diabetes is a condition in which the pancreas does not produce enough insulin — a hormone that regulates blood sugar by helping cells extract energy from food. By contrast, people with Type 2 diabetes are capable of producing insulin, but their body is unable to use it effectively.
“I knew it was going to be something different in my life,” having Type 1 diabetes, Alex says, sitting at the kitchen table in his family’s Fairfax home. “I was hoping that no one would see me as a different person, and that this wouldn’t change so much of who I am.”
The diagnosis has not changed how Alex’s friends view him. They help him manage the autoimmune disease by making sure he has his supplies and by checking on him if he seems lethargic at school.
Being diagnosed has also made the already slim, physically active teenager take his health more seriously. He watches his food choices, especially at restaurants, where he’ll select a salad or something else less carb-laden than french fries.
“I feel like my mindset has changed,” he says. “I’m listening to my body a lot more. Because if you can’t tell that your blood sugar is low then that is a serious problem. You have got to listen to your body.”
The consequences for not listening are severe. Without insulin, the body is unable to extract energy from food. This puts a person at risk to develop diabetic ketoacidosis.
“The body is now starved, and it starts to break down muscle and fat” for nutrition, says Ellen Leschek, program director in the Division of Diabetes, Endocrinology and Metabolic Diseases at the National Institutes of Health. “If you don’t get insulin, you could go into a coma and people can even die.”
Type 1 diabetes was formerly called juvenile diabetes because of its prevalence in young people. But adults can develop Type 1 diabetes and children can develop Type 2, Leschek says. Some 1.25 million Americans have Type 1 diabetes, including 200,000 children, according to JDRF (formerly known as the Juvenile Diabetes Research Foundation).
Diabetes may go untreated because it goes undiagnosed.
Alex and Beth were expecting he’d have a routine pre-summer camp check-up last June.
A nurse initially deemed Alex healthy. That was before Beth mentioned that her son had been drinking and urinating excessively. The nurse tested a urine sample. After looking at the results, the nurse obtained a blood sample.
“Already I am thinking that it seems strange they are looking at his blood,” Beth recalls.
The nurse left the room; a doctor entered and asked Beth to step outside. “He is diabetic,” the doctor said to Beth.
Beth thought they’d be handed a prescription for medication. But the situation was more serious.
“What I need you to do is to go from here to the emergency room,” the doctor told her, warning her that Alex probably would end up in the intensive care unit. He didn’t, largely because he was generally healthy.
Alex and Beth drove to Inova Fairfax Hospital. Michael Frame left work to be with his son and wife. Then a flurry of doctors and nurses introduced themselves to the Frames. Before Alex could be sent home, he and his parents had to become experts on Type 1 diabetes.
Alex had several common symptoms leading up to his diagnosis. The first one was weight loss, which the family noticed, but attributed to him being physically active. The second was excessive urination — a side effect of a lack of insulin. The last symptom was extreme thirst.
The Frames have no family history of Type 1 diabetes. What prompted Beth to mention the symptoms to the nurse? She saw the illness take a life before.
When the family was living in England, a friend’s 2-year-old daughter experienced similar symptoms to Alex’s. The child died after developing diabetic ketoacidosis.
“You think you’re being the paranoid Jewish mother,” Beth says. “You don’t really think your kid is going to be diabetic.”
She describes Alex’s initial reaction as “blissfully naïve” about the impact it would have on his life.
Today, Alex has mastered most of the complexities of his illness. Testing and correcting his blood sugar at school initially was a prolonged affair in the nurse’s office.
“Before I would take like 10 to 15 minutes doing everything, but now I’m finished in the blink of an eye,” he says.
If it all sounds like it would become routine, then think again.
“It’s definitely not the same every day,” says Michael. As much as the Frames have learned, there are still moments where Alex’s blood sugar — and consequently his mood or energy — will change for no apparent reason.
A family friend who has Type 1 diabetes told Beth it never becomes normal, it “just becomes a part of your life.”
At Sunday’s walk, the crowd of thousands was divided into teams, each with its own shirt. The Frames chose a baby blue shirt with white lettering and were called Team Tikvah. The team raised more than $4,000.
Also at the One Walk were Terri Zall, Ken Morris and their son Jonathan, 14, a student at Charles E. Smith Jewish Day School in Rockville. Jonathan was diagnosed with Type 1 diabetes several months before Alex. His team, Team Chronically Awesome, raised more than $2,800.
Alex and Jonathan will spend a week together at Lion’s Camp Merrick in Charles County, Md., in July. Merrick is a traditional summer camp, but caters to children and families with diabetes.
When Alex returns from camp, he will only have a few weeks before he starts high school — American Hebrew Academy, a boarding school in Greensboro, N.C.. Alex has wanted to go there for a long time, but his parents were worried that he wouldn’t be able to manage his illness 300 miles away from home.
“I leave in August,” he says. n