People who have thrived with Type 1 diabetes for 50 years or more are inspiring doctors in Toronto to investigate why and how they've accomplished the feat in order to help other patients.

Type 1 diabetes is an autoimmune disease that stops the pancreas from producing the hormone we need to use carbohydrates as fuel. People with Type 1 diabetes must inject insulin to prevent serious illness or death.

Type 1 diabetic Louise Steel

Louise Steel, 68, says she was distraught when diagnosed with Type 1 diabetes at 18, but chose 'to live a good life.' (CBC)

The life expectancy for those with Type 1 diabetes may be shortened by as much as 15 years, according to the Canadian Diabetes Association.

"In the 1940s, roughly half of people with Type 1 diabetes were getting end-stage kidney disease in their 40s and dying in their 40s," said Dr. Bruce Perkins, an endocrinologist at Toronto’s Mount Sinai Hospital.

Diabetes longevity

A U.S. modelling estimate based on data from the Pittsburgh Epidemiology of Diabetes Complications suggests that the life expectancy at birth for someone diagnosed with Type 1 diabetes between 1965 and 1980 was estimated to be 68.8 years compared to 72.4 years for the general population. In comparison, for someone diagnosed with Type 1 diabetes between 1950 and 1964, the estimated life expectancy at birth was 53.4 years.

Most Canadian provinces lack diabetes registries. That’s why researchers aren’t able to identify the type of diabetes someone has using billing codes and administrative databases.

Perkins is leading the Diabetes Longevity Study — the first Canadian study of its kind looking at the personal experiences of Canadians who have lived with Type 1 diabetes for 50 years or more.

Perkins attributes their success to "relentless vigilance of taking care of their diabetes."

"These are people who’ve managed that vigilance to take such good care of themselves to manage that fine balance of blood sugar year after year for decades. That is actually a miraculous achievement."

Perkins and his team are exploring some potential reasons, such as:

  • Better insulin.   
  • Advances in technology, such as insulin pumps (small, computerized devices that deliver insulin and can help people achieve better control over blood sugar) and continual glucose monitors (a device with a sensor under the skin that estimates blood sugar every five minutes to give the diabetic a head’s-up about what direction their levels are heading.)
  • Excellent health care and social supports.
  • Genetic makeup, which could help some people prevent injury to their organs better than others.
  • Some people have an insulin reserve — a tiny amount of the hormone that isn’t enough to keep blood sugars under control but helps to top up levels naturally.

Louise Steel, 68, of Toronto, is one the longstanding diabetics participating in the study. Steel is now happy to help out those who are newly diagnosed. She reflects both on what’s changed and stayed the same since she learned her diagnosis at age 18.

People with Type 1 diabetes make up about one in 10 of those with diabetes.

"I was very distraught when I was diagnosed," she recalled.

Initially, Steel said she was full of negative thoughts about what she couldn’t eat, the life-sustaining chore of testing blood sugars with strips and the large, slow devices of the day, and injecting insulin into her abdomen five times daily.

Steel can relate to the initial misgivings people often feel when they are first diagnosed. She learned to accept and deal with it.

"You either take your insulin or you don’t," Steel said. "You have a choice. Take your insulin. Live healthy. Live a good life or don’t live."

Steel said she keeps a positive outlook about her condition, walking at least five kilometres a day and volunteering.

Perkins’s team is still recruiting people in the Toronto area for the second phase of the Diabetes Longevity Project.

The research is funded by the JDRF, formerly known as the Juvenile Diabetes Research Foundation. It is being conducted in collaboration with the Leadership Sinai Centre for Diabetes at Mount Sinai Hospital and the University Health Network in association with the Joslin Diabetes Center at Harvard Medical School.

With files from CBC's Kas Roussy