Part One: Diagnosis, The 0.00042 Percent 

by David Alexander

FOR ROUGHLY TWO months last fall, Ann Arbor 8th grader Bram Lesko was urinating about once an hour. But he didn’t know why.

“I wasn’t drinking that much water,” he said.

He was playing junior football, and practicing 2-3 hours daily. In the midst of a football game one Saturday afternoon, Bram came off the field and complained of light-headedness to the team’s EMT—his mom, Patricia Lesko.

“He was pale and clammy,” said Patricia. “He’d lost weight—from practicing 2-3 hours a day, five days a week, we’d thought—and was urinating all the time. I decided he should go to the pediatrician the following Monday. We were lucky.” (Disclosure: Bram Lesko is the son of The Indy’s editor).

On Oct. 13, they had the option of waiting for the results of a test that would take several hours or admitting their son to the emergency room. They chose the latter, and roughly six hours after his admission, Lesko was injecting himself with insulin. Doctors had diagnosed him with type 1 diabetes. Two weeks later, his junior football team played cross-town rivals at Michigan Stadium and Bram was in the game—his insulin, needles and blood sugar testing kit in a bag on the sidelines.

Type 1 diabetes is an autoimmune disease where the victim’s body attacks the pancreas, preventing it from producing insulin. Without insulin, the body cannot absorb energy from food. Medical professionals do not fully understand the causes of type 1 diabetes, believing that a combination of genetic and environmental triggers cause it. Diet and lifestyle do not affect its onset. Type 1 diabetes is unpreventable and incurable.

According to the Juvenile Diabetes Research Foundation (JDRF), Lesko is one of as many as 3 million people with type 1 diabetes. That’s 0.00042 percent of the world population. Each year, more than 30,000 people, half of whom are children, are diagnosed with type 1 diabetes, also called juvenile diabetes.

However, Kate Durak, executive director of the Southeast Michigan chapter of JDRF, said with adult onset becoming more prevalent, organizations such as JDRF are instead opting to use type 1 diabetes instead of juvenile diabetes to describe the disease. Many aspects of type 1 diabetes distinguish it from type 2 diabetes. Most prominently, since type 1 diabetes is an autoimmune disease, not a metabolic disease like type 2, honing in on, and correcting, the disease’s triggers is perhaps the biggest challenge faced by researchers.

“To fix that trigger is really, really complicated,” Durak said. “I’m not a scientist, but that is what researchers are so confounded by: how do we turn off that one aspect of the autoimmune response?”

Without a comprehensive idea of how to stymy the disease, organizations like JDRF focus on managing and abating complications, Durak said. Although, diabetes awareness is at an all-time high, the effort to make the public aware of the distinctions between types 1 and 2, and the challenges each faces, is still a bit of an uphill battle. Still, while a small endowment to raise awareness of type 1 diabetes has begun to strive toward that effort, Durak said JDRF still prides itself on using most of the money it raises — around 80 percent — to innovate new solutions through technology and advocacy.

Innovative technology such as the insulin pump Lesko uses. Such pumps were not common a generation ago, but are becoming increasingly widespread. In order to get his insulin pump —a contraption that fixes to his waist while a surgical tube feeds insulin into his abdomen —Lesko had to prove he could be diligent about monitoring his blood sugar. Doctors suggested he check his blood sugar six times a day; his parents insisted he do it 10 times a day. And, although his parents’ hovering is not terrible, Lesko still occasionally messes with them, telling them his blood sugar is a lot higher than it is — a kid’s got to maintain his sense of independence, after all. He said the pump is a great improvement from needles.

“It hurt a lot at first. But it’s not so bad now,” he said. “It just kind of grabs you; it feels like a really sticky sticker.”

Although the pump is quite durable — it can even sustain falling in the toilet — it’s not perfect. Since exercise lowers blood sugar, if Lesko goes to the gym or rides his longboard, he can still get sweaty and fatigued.

But fatigue and sweatiness are merely symptoms of low blood sugar. Complications from diabetes can be much more dire, including heart attack, stroke, kidney failure, blindness and limb loss. According to American Diabetes Association, diabetes contributes to more than 230,000 deaths a year.

Management is the key, Durak said.

“If managed well, a person diagnosed at any age … can expect to live just as long as you and I,” she said.

However, while diabetics can and do live as long as non-diabetics, according to the Centers for Disease Control, a diabetic is twice as likely to die as a non-diabetic of similar age.

Jane Maeroff is a of diabetic who illustrates JDRF and other’s shifting to the term type 1 instead of juvenile diabetes. Doctors diagnosed her with type 1 diabetes when she was 27. Now, she works as a secretary at Clague Middle School, where she helps Lesko and the school’s two other diabetic students deal with their disease. A cabinet in her office houses supplies for them.

“I know a little bit about what they are going through,” she said. “It’s a lot different than when I was diagnosed. Then, doctors were like ‘No sugar — ever, of any kind.’ [Now] it’s OK to have a candy bar or a cookie.”

Having been brought up to avoid sugar, Maeroff takes her luxuries where she can get them. Her family members still allow her the first sliver of their pieces of cake; it’s become somewhat of an ongoing joke. She said has been reluctant to take up using an insulin pump, instead preferring to give herself injections as she has done for the past 35 years. The injections have become second nature to her and having just a bit of cake here and there is more than enough to satisfy her.

But independent of preferences, the cost of diabetes is not just paid by its victims.

In healthcare, more than $1 out of every $10 in the United States are spent directly on diabetes and more than $1 out of every $5 goes to care for people diagnosed with diabetes, according to the American Diabetes Association.

Maeroff said Lesko deals with his classmates’ inquiries about the disease well, but Lesko said sometimes he just tells them to mind their own business. It’s not out of animosity. He explains it so often, sometimes, he said, he just gets sick of it. Many of his classmates just don’t understand.

“They will be like ‘You mean you get to go down to the office and get candy? Maybe I should get diabetes,’” he said. “I tell them ‘It’s not worth it.’”