Five weeks after our son’s diagnosis of T1D, we were back in the Pediatric Specialty Unit at our first follow up visit with the endocrinologist. She closed the appointment by saying, “You guys are doing great. We don’t know what causes Type 1 Diabetes. It just happens that the right two people with certain genes found each other and fell in love.”
Type 1 Diabetes is an autoimmune disease, and after hearing that, it felt like we’d given our kid some bum genes. Like certain cancers, one of the latest theories on the etiology of Type 1 Diabetes is related to the gene-environment interaction, which is commonly described with this analogy: genes load the gun and environment pulls the trigger. If we’d loaded the gun, I wanted to find out if it was likely that we’d also pulled the trigger.
I spent a lot of time reading medical articles describing the hazy understanding of the etiology of Type 1. There are certain risk factors that make the disease more likely, but besides recently moving to a cold climate, Henry had none of these risk factors. In the general population, with no history of Type 1 in the family, the chance of developing Type 1 is 0.4%. On both sides of our family, Henry is the first person to have Type 1. We have the usual history of autoimmune diseases that are common in the developed world, like rheumatoid arthritis and Hashimoto’s, but no T1D until now. 0.4%
In my research, I did discover that Type 1 is increasing about 3% annually, which in the world of disease, is a quickly climbing rate. If I’m being honest with myself, I knew I wouldn’t find any answers in all the research, not even much peace.
There’s nothing any parent of a child with T1D does or doesn’t do. There are certain populations and places where Type 1 Diabetes is more likely, but until there is a disease registry, we won’t know the true occurrence of T1D. I still find it fascinating to read case studies and medical articles, like “Pathogenesis of type 1 Diabetes” by Massimo Pietropaolo, MD (subscription required to read full article), but sometimes a good meme nails it.