A little over a week ago, I sat in the audience of a lecture, “Prevention and Treatment: From Probiotics to Immunotherapy,” given by the current president of the American Diabetes Association (ADA), Desmond Schatz, MD at the Friends for Life conference in Orlando, FL.
The talk was a speedy assessment of what is known about type 1 diabetes today, and to anyone who follows the current research, it’s no surprise that what we know is actually how much we don’t know. A few minutes into the talk, Dr. Schatz kept repeating the phrase, “a need for urgency,” as in, “There is a need for urgency for research participation” and, “There is a need for urgency for funding models to change.” Dr. Schatz then acknowledged that everyone in the room understood the need for urgency because we either had diabetes or loved someone who had diabetes.
He then gave some statistics in the talk.
In Finland, a country with one of the highest instances of T1D, 1 in 123 people has type 1.
In the United States, about 1 in 300 people has type 1.
Worldwide, new cases of type 1 diabetes double every 20 years. That’s a new urgency: an autoimmune disease with no known trigger and no known cure doubles in occurrence in a little less than a generation.
When our son was diagnosed with type 1 diabetes, with no family history, the urgency was new to us. After a while, we looked up from our life that now included carb counting, medical devices, glucagon kits, needles, pokes, and insulin, to see that the urgency is spreading like a slow avalanche.
As Semisweet closes its first year in the DOC, and opens its second, the new urgency is why we share our stories. The numbers of T1D are only growing, but now, T1D is no longer a number for us, it’s a story, it’s part of our life. Stories are advocacy.