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T1D Looks Like ME

By: Alene Couture Kuchmey

This year I’m “celebrating” 21 years of type 1 diabetes, virtually complication free.

From the JDRF (Juvenile Diabetes Research Fund) website: “Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells.”

JDRF - T1D Looks Like MeThe year before I was diagnosed with diabetes I had pneumonia. I believe that my body’s reaction to that illness as well as genetic factors are the reason that I have diabetes today. It had nothing to do with a sedentary lifestyle or my diet. I hope to break some of the stereotypes and preconceptions that people have about this disease.

My paternal grandmother had type 1 diabetes as well. She died when I was two and she was in her early fifties of complications of the disease. She boiled and sharpened glass syringes, didn’t have a home glucose monitor (they weren’t invented yet), and had to carefully watch what she ate starting only about three decades after the discovery of insulin. And she became ill very early on.

My life with diabetes has been so much different than hers. I test my blood-glucose whenever I feel the need to, typically 7-8 times a day, I wear an insulin pump, I can eat what I want, when I want. I have hope for the future. And although I never really knew my grandmother, I always have her in my thoughts when I am having a difficult time. We have come so far.

This still doesn’t make it easy. It’s a constant struggle. So many different things effect my blood-sugar: stress, exercise, hormones, nursing my infant daughter, and of course food. I have better tools to manage my condition, but they are not always perfect.  We still have a long way to go.

I never imagined that I would see a cure in my lifetime until the JDRF shared the news that they were working on encapsulation therapy. Islet cells, the cells that make insulin, the hormone that my body does not produce, and regulate blood-glucose, would be implanted into my body. Unfortunately, the islet transplantation alone isn’t a good option because the immune system will always attack the donor cells, which means the patient would have to take anti-rejection drugs. Encapsulation therapy is a promising alternative to just transplanting the cells alone, because it is one way to disguise the cells from the immune system. They have recently begun trials for encapsulation therapy in Alberta. I hope to one day be the recipient of donor islet cells.

Until then, I worry about the damage that has been caused to my body so far. I worry about the years that have been taken from my life. I worry about T1D continuing in my family line. I also worry about the family and friends I have with Type II Diabetes. I don’t know as much about T2D, but I see the damage that it can cause. If you had T2D and are reading this, please know that if I can hold onto my health for so long, you can do the same, if you are still in the early stages of it, and if you work very, very hard.

I will continue my journey with a positive frame of mind, and I will do my best to maintain my health, but this is not something I can do alone. Thank you for reading my story, if you are so inclined, please make a donation to the JDRF: https://jdrfca.donordrive.com