So, I was dx’d back in 1983 a couple of weeks after turning 28. I was pretty shocked. I had the standard reaction: “I thought only kids got that!” But onset had been rapid over the course of maybe six weeks tops, had all the acute symptoms. The doc said “Probably your wife wouldn’t have been able to wake you up tomorrow morning,” and went on to explain that current science indicated age of onset wasn’t seen as a determining factor anymore because of cases like mine. In fact, they were changing the whole terminology to reflect that fact. Soon it would be called “type 1” or “type 2,” precisely to eliminate that confusion. But it hadn’t been made official yet, so it went into my chart as “diabetes mellitus, juvenile type.”
For a long time I had no idea how lucky I was to be correctly diagnosed. It was only decades later, with the onset of the Diabetic Online Community, that I started encountering many, many people who had been and were still being diagnosed Type 2 merely on the basis of age of onset, and mis-treated for extended periods because “You’re too old to have ‘type 1.’” Pause to reflect on the irony of that all-too common statement.
And this is still going on.
I couldn’t find a better category for this post, but I only recently came upon the fact of the JDRF’s re-branding, and I’m needing to register my disappointment at what I was hoping to see and didn’t, and what a missed opportunity this seems to me to be.
Because misdiagnosis due to age of onset is a medical problem, not just a public-relations one. I help run a popular diabetes website and I have a direct window onto the fact that people are still being misdiagnosed on the basis of YTOTHT1. So I approached this new site with some hope of seeing evidence of action to go along with the (gotta say, really belated) recognition that the old name didn’t reflect medical/scientific reality. The JDRF was and is an important and venerable institution, but that very success has been partly responsible for embedding the old “juvenile” association so deeply in the popular—and medical—mindset that the misperception lives on as a kind of zombie fact. It’s depressing to see so many patients over so many years telling appalling stories about undergoing misdiagnosis, and seeing so little—if ANY—awareness on the part of the medical or institutional community that this is anything they need to DO anything about. And the really insane thing is that it would only take some small practical steps to change this. In other countries–Spain for instance–antibody and c-peptide testing is a routine part of diagnosis for adults presenting with symptoms of diabetes. “Well but tests are expensive” the insurers say. Sure. So is going for months, even years, with the wrong diagnosis and a treatment regimen that doesn’t address the actual condition. People getting scolded for being “Noncompliant” when metformin, diet n exercise isn’t producing any results. “You’re just not working hard enough at it!”
Speaking as one dx’d as an adult, I am grateful to see that that experience has more space here. But I have looked in vain for any initiatives or advocacy around changing behavior of the medical profession to reflect the issue the terminology change was instituted to address, some 40 years ago. The JDRF’s rebranding seems like an incredible opportunity to draw attention to that issue and push for change in diagnostic practice to correct it. 40 years ago I was told “Don’t worry, we think a cure is just five years off.” Still waiting on that one—hey, it’s a hard nut to crack. But there’s no excuse for the misdiagnosis issue to still be with us that same length of time later. Seems like Breakthrough (née JDRF) could be using the opportunity of their branding change to take a stronger, more direct role in changing behavior, not just nomenclature, than I’ve seen here. If I am missing something I would be gratified to be corrected.