Diabetes Labels: The Name Game
Before taking individual stands on terms, lets take a united stand on definitions.
with Amy Tenderich
Editor's Note: While this columnist is no longer writing for dLife.com and we have ceased to update the information contained herein, there is much to be read here that is still applicable to the lives of people with diabetes. If you wish to act on anything you learn here, be sure to consult your doctor first. Please enjoy the column!
December 2005 —A writer, a mother, a brunette, a diabetic – all these terms describe me. And I don't take offense to any of them, because to me, none of them are derogatory. I realize that the diabetes community is pretty much split down the middle on whether to insist on being called a "person with diabetes" rather than "a diabetic." But there are so many terms and labels bouncing around the diabetes arena, my personal take is that we ought to seek some clarity and stop getting insulted (i.e. agree on definitions and get over the emotional baggage).
Let's start with the definitions. What do common diabetes labels actually mean?
Type 1.5 (LADA)
People sometimes write to me asking: "Is there such thing as Type 1.5 diabetes?" Yes, there is, and I'm it. Type 1.5 generally refers to people diagnosed with Type 1 diabetes (formerly called "juvenile diabetes") as adults. This means they are not simply insulin-resistant like most Type 2's, but tend to require insulin injections immediately. This condition is a breakdown of the immune system also known as Latent Autoimmune Diabetes in Adults (LADA).
Why are more and more people presenting with a disorder that falls between the traditional Type 1 and Type 2? Remember, these are just labels. The experts tell me that diabetes is a continuum – ranging from the slightest of insulin resistance problems (pre-diabetes) all the way up to a completely pooped out pancreas that needs to be supplemented with large amounts of insulin. We all fall somewhere along this scale.
Type 3 (Fuzzy)
OK, so where do Type 3's come in? Here's where things get really fuzzy, because there's no standard definition for Type 3. dLife likes to use this term to refer to our significant others, who do not have diabetes but live with it vicariously through us. Cute! (My husband assures me this is not as easy as it looks).
But recent research by Brown Medical School in Rhode Island also identified an entirely new kind of diabetes that they are calling Type 3. This disorder affects brain insulin levels, and appears to be linked with Alzheimer's disease. This one's still under study, and unrelated to blood glucose level issues we deal with having Type 1 or Type 2 diabetes, therefore it remains to be seen if the "Type 3" label will stick.
Brittle, Noncompliant, and MODY
The term "brittle" is also misunderstood. I always thought it meant somebody who'd done a lousy job of taking care of their diabetes, and was thus totally out of control. In fact, brittle does mean fluctuating sugars, but it is not meant to be a value judgment. Anyway this term is outdated and largely out of use.
"Noncompliant" is just another way of saying "uncooperative," which is indeed derogatory – and silly. Who among us does not want to achieve good enough diabetes control to live a long and healthy life? Anyone not carrying out doctor's orders is probably in denial or having serious troubles doing what they know they ought to do. That person needs help with motivation, not a reprimanding stamp. In fact, we should be calling them "overwhelmed" rather than "noncompliant."
A new term for certain children diagnosed with Type 2 is MODY, shorthand for "Maturity Onset Diabetes of Youth," which as David Mendosa points out is not incorrect, just self-contradictory and confusing. Unfamiliar folk sometimes misapply this acronym to any child or adolescent with any form of diabetes that does not require insulin. In fact, MODY was meant to describe a rare genetic disorder different from the increasingly common diagnosis of Type 2 diabetes in children.
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As I mentioned in an earlier post, one of the benefits that made it cost-effective for me to go with the real healthcare (HSA) plan rather than the phony (HRA) plan is that my company is now covering "preventative" medicines at $0 copay. The formulary for these, as stated by CVS/Caremark (my pharmacy benefits provider), covers all test strips, lancets, and control solutions. I dutifully get my doctor to write up prescriptions for all of my testing needs, submit...