Why have type 1 diabetes patients done so well?
“In the 60’s there were strong stereotypes about people who had diabetes,” says Martine Farand who was diagnosed with type 1 diabetes at age one and a half and was told she would only live until 20 years old. “People assumed you were not going to live long, that you would be a burden to society or that your legs would be amputated. Everyone knew someone with a horror story, but I did not want to be painted that way. I wanted a fair chance in life.” Now at age 52, she thanks her mother for teaching her healthy eating habits and giving her the reigns when it came to managing the disease.
Farand is one of hundreds of Canadians participating in a Diabetes Longevity Study that is being led by Dr. Bruce Perkins, Endocrinologist at Mount Sinai Hospital’s Leadership Sinai Centre for Diabetes and researcher at the Lunenfeld-Tanenbaum Research Institute. As the first study of its kind in Canada, the Diabetes Longevity Study is looking at the personal experiences and success stories of Canadians who have been living with type 1 diabetes for 50 years or more. The study aims to determine factors that contribute to the more recent management success of the disease and provide new insight into the discovery of novel mechanisms, biomarkers, and therapies.
Today almost one million Canadians live with type 1 diabetes and they are living longer than ever before. Researchers at Mount Sinai Hospital are looking into what contributes to their success in managing the disease.
Type 1 diabetes is an autoimmune disease that stops the body from producing insulin, the essential hormone needed to turn sugar into energy. Compared with the more common type 2 diabetes, type 1 often appears in childhood or young adulthood. Before the 1980s, type 1 diabetes management was extremely challenging and complications from the disease were frequent and fatal. But today almost one million Canadians live with type 1 diabetes and they are living longer than ever before. “We are extremely proud of people who have lived with diabetes for 50 years. We recognize that we have a lot to learn from those who have thrived in the face of diabetes management challenges over the decades,” says Perkins.
Typical type 1 diabetes complications can include damage to the nerves, eyes, kidneys and blood vessels, all of which can occur when diabetes is poorly controlled. But previous studies have shown that substantial numbers of people with type 1 diabetes can survive for an extreme duration of the disease without the development of advanced complications, despite the lack of methods for intensive diabetes control for many years of their lives. “We want to understand what this population has done in the face of diabetes management challenges that allowed them to live with limited complications for so long,” says Perkins.
Participants in the study have the opportunity to reflect upon the long-lasting challenges of living with type 1 diabetes and to share their personal experiences. Some participants even recall boiling glass syringes before every insulin injection.
“I’ve been on insulin since day one. So at a young age I became very aware about how I felt in relation to my condition. I banned some foods right away, like juice. It was not a necessary food item. My life became a matter of making healthy lifestyle choices and setting boundaries so that I can live my life to the fullest,” says Farand.
Researchers at Mount Sinai Hospital are still recruiting study participants. If you have had type 1 diabetes for 50 years or more or know someone who has contact study coordinator, Elise Halpern at firstname.lastname@example.org or 1-855-808-0150 or go to www.diabeteslongevity.ca for more information.