Even those of us living with diabetes may find some of the terms that define it confusing, so I took this opportunity to review some aspects of diabetes terminology that were particularly puzzling. If you’d like other diabetes-related terms explained, consider checking out Diabetapedia.com or registering to comment.
Let’s start at the beginning! Diabetes, the short name for diabetes mellitus, occurs when your body cannot use blood glucose as energy because it does not have enough insulin and/or is unable to use insulin properly. The majority of diabetes cases fall into either the category of type 1 (about 5% of those diagnosed) or type 2. Among the general population, there seems to be confusion between these two types of diabetes.
One reason for this may be that even doctors didn’t always use the terms “type 1” and “type 2” until about 1998. Before that, patients were diagnosed by their type of treatment rather than the cause of the disease, with the classifications being insulin-dependent (IDDM) or non-insulin-dependent (NIDDM). When Dr. Zachary Bloomgarden began to practice endocrinology in the late 1970s, he says, “IDDM and NIDDM were all the rage in that distant past era.” Today he, like other doctors, uses the terms “type 1 diabetes” or “type 2 diabetes.”
Adopting usage of the type 1 and type 2 classifications has certainly helped to differentiate between the two. It has not, however, succeeded in weeding out all of the other descriptive words to classify types of diabetes, most notably, juvenile and adult-onset diabetes.
The idea behind this term is understandable, but not very accurate anymore. People often assumed that type 1 diabetes was always diagnosed in childhood, and so “juvenile diabetes” was synonymous with “type 1 diabetes.” “When I was diagnosed with diabetes forty-one years ago at the age of eighteen, I was actually misdiagnosed,” says Riva Greenberg, author of the new book Diabetes Do’s & How-To’s. “Doctors thought I had type 2 because they couldn’t imagine I could have developed ‘juvenile diabetes’ at age eighteen.”
But type 1 diabetes can – and is – diagnosed in adults. Each year, in fact, as many adults as children are diagnosed with type 1 (about 15,000 children and 15,000 adults per year in the US).
The move to eliminate the use of the word “juvenile” took center stage in January 2012 when the Juvenile Diabetes Research Foundation, the leading global diabetes organization focused on diabetes research, founded in 1970, announced a name change and re-branding. The organization officially became JDRF, with a tagline – Improving Lives. Curing Type 1 Diabetes – that no longer mentions juvenile diabetes. “‘Juvenile’ left out a large number of people affected by diabetes (adults) and was often misleading,” says Tara Wilcox-Ghanoonparvar of JDRF. “JDRF’s goal is to support people of all ages, and at all stages of the disease, so our brand needed to reflect that all-encompassing support. This was a collaborative decision that was developed with a lot of care and thought.” Greenberg says, “I’m grateful for the name change to type 1 because you can get it at any age, because children grow up and shouldn’t be saddled with a disease name that only seems to refer to children, and because many people who have type 1 diabetes are over fifty.”
We are beginning to understand that type 1 diabetes can affect adults and even be an adult-onset disease.
There is still a common notion that type 2 diabetes is only “adult-onset.” This may have been true once upon a time, but not so in recent years. As the diabetes epidemic has surged, so has the rise of type 2 diabetes in children. According to the CDC, “when diabetes strikes during childhood, it is routinely assumed to be type 1, or juvenile-onset diabetes. However, in the last 2 decades, type 2 diabetes (formerly known as adult-onset diabetes) has been reported among US children and adolescents with increasing frequency.” Statistics from the National Institute of Diabetes, Digestive, and Kidney Diseases agree: “During 2002–2005, 15,600 youths were newly diagnosed with type 1 diabetes annually, and 3,600 youths were newly diagnosed with type 2 diabetes annually.”
Latent autoimmune diabetes in adults (LADA), is classified as adult onset type 1 diabetes, and is sometimes known as type 1.5. You can learn more about LADA here.
So while we’ve begun to define diabetes by its different causes, rather than by its treatment or the age of onset, the causes are not widely understood by the general public. “There are times I think it might be beneficial for the names of type 1 and type 2 diabetes to be completely different,” says Greenberg. “It might help alleviate the confusion between the two types.”
Jessica Apple is the co-founder and editor-in-chief of the online diabetes lifestyle magazine A Sweet Life. Her writing has appeared in many publications, including The New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, and Tablet Magazine. Apple is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor, and not of Sanofi US, its employees, agencies, or affiliates.
© 2013 The DX: The Diabetes Experience