No, this is not about the Oscars, but something far more relevant to our lives. This envelope contains the results of a blood test to see if my middle son Ben has developed antibodies which would show whether he is or isn’t likely to develop Type 1 diabetes within the coming 12 months. When my youngest son Leo was diagnosed with T1D almost 11 years ago, the endocrinologists at Columbia told us about a research study which involved testing the first-degree relatives of newly diagnosed diabetics. The purpose of the study (TrialNet) is to identify who tested positive for these antibodies and possibly prevent the onset of diabetes or at least slow down the onset of the full-blown disease.  My husband and I agreed to be tested (we were negative) but we were not prepared to have our other children (at that time, ages 5 and 7) take part in the study.

As a physician, I understood the value of research, but I was not ready to hear anymore potentially bad news while dealing with a 13-month old diabetic child.  I felt conflicted.  My other sons already had celiac disease, another autoimmune condition closely linked to diabetes, which put them at a higher risk. If they tested positive in the study, they would have been given a placebo or else oral insulin for several years to see if this would help prevent diabetes. As parents, we couldn’t wrap our heads around this. Why look for more trouble, just to be part of a study which may not even help us? We declined the testing for them.  However, a funny thing happened about 9 months later. There was an outbreak of Coxsackie, a common childhood virus, in the older boys’ summer day camp. Coxsackie disease is linked to the development of diabetes in people who are predisposed. Upon hearing about the inevitable outbreak, I needed to know if my other boys were, in fact, liable to develop T1D. So I quickly drove to their camp and took them down to Columbia to test them. Now that may sound crazy, and of course, the kids were furious, but I needed to know. The waiting time for results is 6 weeks, and they arrive in a letter, the way college admissions decisions used to arrive. With the same dreaded full-bodied-tremor of anticipation.  Thankfully, the boys were negative, but antibodies can develop at any time, and so we’re told to screen them each year.  We couldn’t stomach the idea of this, and so we were not pro-active in re-testing.   23 months later, Sam, my oldest son, was also diagnosed with diabetes.  No joke, a reminder letter from Trial Net arrived the next week, telling us it was time to re-test our boys.

I was angry for many reasons, most importantly because my 9 year old Sam now had to live with diabetes in addition to celiac disease, which he already hated. I also felt guilty that we didn’t have them re-tested at the appropriate 12-month mark, which may have helped.  Years later, data showed the prevention trial was proven to be ineffective. But at the time, I just felt awful.  I let some of my frustration out on the researchers. “Before you send out reminder letters”, I asked them, “can you check to see that no one in your database had the misfortune of being diagnosed within that time frame?”  This would prevent others from getting a second punch in the gut

What good would it do know, you may ask? I am not sure. If Ben tested positive, I would only worry more, constantly watching for any symptoms. I know this is a dilemma for many genetic diseases, where patients debate endlessly the cost-benefit ratio of knowing vs. not knowing what they may develop. This will be the case until there is gene therapy or other effective preventions. When I mentioned this at a national JDRF conference one year, several people, including a chairperson, confided in me that they often held out on enrolling in studies due to fear of bad news    We continue to test Ben annually, and so far he has not developed the antibodies.   We sweat out the 6 weeks until the letter arrives, which it did last week, and we breathe a bit more freely for a year.