Long-term survivors are helping unlock the mysteries of type 1 diabetes

It’s hard to imagine what it was like to live with type 1 diabetes 80 years ago. Insulin was a brand new and relatively untested drug, the only way to check blood sugar levels was by testing boiled urine, syringes had to be sterilized, and needles sharpened by hand. Couple those challenges with the common complications of diabetes—heart disease, kidney failure, nerve damage, blindness, and more—and life expectancy for someone with type 1 diabetes wasn’t that long.

Spencer M. Wallace, Jr., was diagnosed with type 1 diabetes in 1931, at age 7. He’s now an active 87-year-old who plays golf several times a week. He isn’t alone as a long-term survivor. Since 1970, almost 3,500 men and women who have lived with the disease for a half century have been recognized by the Joslin Diabetes Center in Boston with bronze 50-year medals. Forty-five of them, including Mr. Wallace, have passed the 75-year mark.

A study that includes several hundred 50-year Medalists is changing experts’ understanding of type 1 diabetes, and may uncover new ways to protect people from the damage it can cause.

Surprising differences

Type 1 diabetes was once called juvenile onset diabetes because it tends to strike at an early age. Over time, the high levels of blood sugar that are the hallmark of diabetes damage blood vessels, nerves, and various other tissues.

Among people with type 1 diabetes, up to 90% experience damage to the eye’s retina (a condition called diabetic retinopathy) within 20 years of their diagnosis. Among the Joslin Medalists, though, only half had diabetic retinopathy after 50 years living with the disease. As reported in the journal Diabetes Care, the Medalists also experienced much less kidney damage and nerve damage than would be expected for folks who have lived for many years with type 1 diabetes.

“It is clear that these long-term survivors are somehow protected against the complications of type 1 diabetes,” said Hillary A. Keenan, co-principal investigator of the 50-Year Medalist Study and an instructor in medicine at Harvard Medical School. Identifying factors that confer this protection could point the way to new therapies to prevent or minimize complications.

Just as remarkable, in more than two-thirds of the study participants, beta cells in the pancreas were still making small amounts of insulin. “If we could find a way to stimulate these beta cells to become more active, it might be possible to regenerate the body’s ability to make insulin,” said Keenan.

Looking ahead

Investigators at the Joslin Diabetes Center are working to identify what helps these cells survive and generate insulin. In the meantime, Keenan and her colleagues continue to recruit, interview, and test Medalists, looking for patterns and possibilities that can help others live long and live well with type 1 diabetes. One surprising commonality: “It’s amazing how many of the Medalists say they enjoy ballroom dancing,” says Keenan.

While living with type 1 diabetes still has its challenges, it is much easier today than it was for the Joslin 50-year Medalists when they were first diagnosed. Checking blood sugar can now be done in a few seconds (though it’s still tough on the finger tips); several types of long- and short-acting insulin are available to control blood sugar; and easy-to-use insulin pens have replaced syringes. By improving blood sugar control, these advances are helping people with diabetes live longer. Lessons being learned from the 50-year medalists may help them live better.