In a set of recent focus groups, participants were asked to rank the severity of various health problems, including cancer, heart disease and diabetes.
On a scale of 1 to 10, cancer and heart disease consistently ranked as 9s and 10s. But diabetes scored only 4s and 5s.
"The general consensus seems to be, 'There's medication,' 'Look how good people look with diabetes' or 'I've never heard of anybody dying of diabetes,' " said Larry Hausner, chief executive of the American Diabetes Association, which held the focus groups. "There was so little understanding about everything that dealt with diabetes."
But diabetes is anything but minor. It wreaks havoc on the entire body, affecting everything from hearing and vision to sexual function, mental health and sleep. It is the leading cause of blindness, amputations and kidney failure, and it can triple the risk for heart attack and stroke.
"It is a disease that does have the ability to eat you alive," said John Buse, a professor at the University of North Carolina School of Medicine who is the diabetes association's president for medicine and science. "It can be just awful — it's almost unimaginable how bad it can be."
Diabetes results when the body cannot use blood sugar as energy, either because it has too little insulin or because it cannot use insulin. Type 2 diabetes, which accounts for 90 to 95 percent of cases, typically develops later in life and is associated with obesity and lack of exercise. Type 1 diabetes, which is often diagnosed in children, occurs when the immune system mistakenly destroys cells that make the insulin.
The disconnect between perception and reality is particularly worrisome at a time when national diabetes rates are surging. Just last week, the Centers for Disease Control and Prevention announced that the number of Americans with diabetes had grown to about 24 million, or 8 percent of the population. Almost 25 percent of those aged 60 and older had diabetes in 2007. And the CDC estimates that 57 million people have abnormal blood sugar levels that qualify as pre-diabetes.
To be sure, diabetes is treatable, and an array of new medications and monitoring tools have dramatically improved the quality of care. But keeping the illness in check requires constant vigilance and expensive care, along with lifestyle changes like losing weight, exercising regularly and watching your carbohydrates.
Buse says patients who are focused on their disease and who have access to regular medical care have a good chance of living out a normal life span without developing a diabetes-related disability.
But some patients say they are too busy to take better care of themselves, and many low-income patients can't afford regular care. Even people with health insurance struggle to keep up with the co-payments for frequent doctor visits and multiple medications.
And to make matters worse, diabetes is associated with numerous other health problems. Last week, for example, The Journal of the American Medical Association reported that people with depression were at higher risk for Type 2 diabetes, and vice versa.
That is not surprising: according to data published last year in the journal Diabetes Care, depression tends to interfere with a patient's self-care, which requires glucose monitoring, medications, dietary changes and exercise.
Ultimately, diabetes can take a toll from head to toe. In the brain, it raises the risk not only for depression but also for sleep problems and stroke. It endangers vision and dental health. This month, The Annals of Internal Medicine is reporting that the disease more than doubles the risk of hearing loss.
Moving down the body, diabetes can lead to liver and kidney disease, along with serious gastrointestinal complications like paralysis of the stomach and loss of bowel control. Last year the journal Diabetes Care reported that in a sample of nearly 3,000 patients with diabetes, 70 percent had nonalcohol fatty liver disease.
Poor circulation and a loss of feeling in the extremities, called neuropathy, can lead to severe ulcers and infections; each year in the United States, there are about 86,000 diabetes-related amputations.
Diabetes can also take a toll on relationships. By some estimates, 50 percent to 80 percent of men with diabetes suffer from erectile dysfunction. Experts say women with diabetes often lose their libidos or suffer from vaginal dryness.
The challenge for doctors is to convince patients that diabetes is a major health threat. For years, the message from the American Diabetes Association has been one of reassurance that the disease is treatable. Now, beginning in 2009, the association plans to reframe its message to better communicate the seriousness of the disease.
"Our communication strategy is going to be that diabetes has deadly consequences, and that the ADA is here to change the future of diabetes," said Hausner, a former executive with the Leukemia and Lymphoma Society who came to the association 10 months ago. "It's the word 'deadly' that was the potentially controversial word for the organization. In the past, people said, 'We don't want to get anybody scared.' "
The new strategy is not a scare tactic, he added. Prevention and hope will still be part of the message.
"It's not that we don't want people to have hope," he said. "We want people to understand this is serious."