Type 1 diabetes facts and misconceptions

“I didn’t even log it as something medical,” Casseia says now. “It’s only in retrospect, looking back at what I was experiencing, that I can recognize these seemingly unrelated things as being symptoms.”

Her eyesight worsened suddenly. She started getting leg cramps at night, severe enough to wake her up. She had to urinate more often and was chugging water. “I was hungry all the time, and I was craving junk,” she said. “At work, I would routinely eat four candy bars in an afternoon.”

Yet she seemed to be losing weight. She was tired all the time and was surprised by her weakness when she tried to help her partner lift the boxes they were unpacking.

Even when Casseia finally went to the doctor, her physician focused on her heart palpitations, ordering a full blood panel almost as an afterthought. Her labs revealed a blood glucose high enough to send her to the emergency room as soon as the results were in. Within hours, she had a diagnosis, at age 26, of Type 1 diabetes.

Until I’d started searching her symptoms on the Internet that morning, I had no idea that an adult could be diagnosed with Type 1 diabetes.

According to a Centers for Disease Control and Prevention report, 34.2 million Americans had diabetes in 2018. Of those, only 1.6 million were Type 1. Because Type 1 diabetes is so much less common, a lot of people have misconceptions about the disease.

Misconception 1: Only children get diagnosed with Type 1 diabetes.

“The old name was juvenile diabetes,” says Robert Gabbay, chief scientific and medical officer for the American Diabetes Association. “And there are still people who think of it in those terms. But it can develop at any age.”

In a healthy person, beta cells in the pancreas produce insulin, which acts as a conduit for glucose to enter cells and be used for energy. In diabetes, this process breaks down, and excess glucose is present in the blood. In Type 2 diabetes, the body becomes resistant to insulin and cannot produce enough insulin to overcome that resistance. In Type 1 diabetes, an autoimmune response attacks the beta cells in the pancreas, and eventually the body produces little or no insulin.

“Why does this happen? The short answer is, we don’t entirely know,” Gabbay said. The disease seems to be partly genetic and partly triggered by environmental factors that are not yet fully understood.

Misconception 2: You’re born with Type 1 diabetes.

While there is a genetic link, the trigger that sets off the autoimmune response in Type 1 can go off at any age. Once the disease begins, diagnosis is usually made within weeks or months. Unlike Type 2 diabetes, which can develop slowly over years, the onset of Type 1 is acute and dramatic.

I asked Gabbay what might have happened if my daughter hadn’t listened to her body and gone to the doctor when she did. The answer: diabetic ketoacidosis (DKA). DKA is a condition that occurs when the lack of insulin causes the body to start burning fat for fuel, releasing ketones that build up in the blood. “When DKA occurs, it can be fatal,” he said. “Even with treatment, people who come into the hospital — the mortality rate is relatively high.”

The bottom line is, if Type 1 diabetes goes undiagnosed, or a patient has no access to diagnosis and treatment, it is fatal. A human being cannot survive without insulin.

Misconception 3: Eating too much sugar causes diabetes.

It’s true that for Type 2 diabetes, being overweight and inactive are major risk factors, although other factors play a role as well. But one thing we’ve learned for sure: Neither diet nor exercise play a role in causing Type 1 diabetes.

Exciting new research may eventually lead to prevention or slowing the progress of Type 1 diabetes in people who carry the genetic markers. Our family has enrolled in a study called TrialNet, run by a network of researchers, including from the National Institutes of Health and the ADA, in which family members of people with Type 1 diabetes are screened for autoantibodies associated with the disease. Those with autoantibodies could then be enrolled in trials of treatments that may prevent Type 1 diabetes from developing.

Misconception 4: Diabetics can’t have sugar.

My daughter, who has always had a sweet tooth, was diagnosed just a few days before Christmas. We helpfully bought her armloads of sugar-free candy from the “diabetic” section of the store. But we didn’t yet understand that it wasn’t just her sugar intake she has to monitor carefully, it was all carbohydrates. Carbohydrates, including sugar, break down into glucose once digested.

For a person with Type 1 diabetes, every carb must be counted and offset with insulin. It’s math that diabetics get really good at. If they get it wrong, their blood sugar could go too high or too low — both of which are dangerous.

Misconception 5: Diabetes is ‘fixable.’

“When insulin was discovered in 1921, it was a game changer,” Gabbay said. It transformed Type 1 diabetes from a death sentence to a chronic disease. People with Type 1 diabetes must inject themselves with insulin every day to live, making access to insulin a life-or-death matter.

Advances in technology such as continuous glucose monitors and insulin pumps have simplified living with diabetes. But it remains an enormous mental and physical burden to take on the work of the pancreas day in and day out.

“When I was first diagnosed, it felt like my body had betrayed me,” Casseia says. But for her, the active role she must play in managing her disease has helped. “Your endocrinologist, your health-care team, they’re a resource,” she says. “But ultimately, this is a disease you will manage yourself. You will figure out what works for you. Yes, it’s a little scary, but it’s also empowering.”