Does Diabetes Need a New Name?

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Thanks to everyone who has commented on “Type 1s Vs. Type 2s?” Really intelligent, heartfelt stories. I wish I had time to reply to all of you individually.

Reading the comments, it seems that we need better language for talking about diabetes. Some themes kept coming up. A thread for many readers was that Type 1 and Type 2 “aren’t the same disease.” Another recurring point was that many people with diabetes are neither Type 1 nor Type 2. They are both, or neither, or a mix of types. Should all these diseases be called by the same name? Are two “types” enough? If not, what would be a better way of naming and classifying these conditions?

Readers reported problems, from annoyance to dangerous misunderstandings and prejudice, caused by people’s ignorance about diabetes. What would help doctors, the public, and people with diabetes understand these conditions better? Let’s see if we can come up with some ideas.

The name “diabetes” is short for “diabetes mellitus.” Diabetes is a Greek word meaning “passing through” (a reference to urine). “Mellitus” is a Latin word that means “sweet.” People with elevated blood glucose tend to have sweet urine and a lot of it.

Diabetes was named in the 2nd century AD by a Greek doctor. The “mellitus” was added in 17th century England. This distinguishes the sugary kind of diabetes from diabetes insipidius, another condition with excessive urination that has nothing to do with glucose.

The Type 1 and Type 2 classification started around 1997. Before that, the usual terms were “juvenile-onset” and “adult-onset.” From the beginning, not everyone agreed that these are the same disease. For example, says “The two main types of diabetes mellitus — insulin-requiring type 1 diabetes and adult-onset type 2 diabetes — are distinct and different diseases.”

I think of diabetes as a range of diseases from pure Type 1, in which a person’s own immune system rapidly destroys insulin-producing beta cells at a young age, to pure Type 2, where insulin resistance eventually wears out beta cells so that they can’t keep up with increased insulin needs. But while there are some pure Type 1s, there are few pure Type 2s. As I wrote a couple of weeks ago, there is usually (Jenny Ruhl of Diabetes Update would say always) some problem with insulin production as well. And there are many environmental and genetic causes for insulin resistance, too. It’s not all, or even mostly, about behavior.

Some of these problems are called LADA (latent autoimmune diabetes of adults) and MODY (maturity-onset diabetes of the young). But there are at least six different types of MODY. There are probably several types of LADA, and there are other forms of diabetes as well. Diabetes of pregnancy (gestational diabetes) is well known. The National Institute of Diabetes and Digestive and Kidney Disease lists at least eight other causes and types at their Web site.

Since the liver stores extra glucose and releases it as needed, liver problems can also be associated with diabetes. Reader Bill H-D posted,

Insulin resistance, inadequate insulin production due to beta cell loss (autoimmune or otherwise), and improper liver calibration (I like to think of it as a broken thermostat) all play a role in all types of diabetes, depending on the individual. And those are just the main three that we know about and have common [drug] interventions for.

It might be that no matter how many types are created, there won’t be enough, because diabetes is so individualized. Reader Cindy B posted, “I focus on MY DIABETES not someone else’s Diabetes.”

It’s clear, though, that most health insurance companies and most doctors don’t see diabetes as an individualized condition. As Joan pointed out, many don’t even know the difference between Type 1 and Type 2: “especially emergency room physicians who refuse to give orders for insulin to a type 1. THAT is when it becomes a problem. When [docs] ASSUME one of middle age is a type 2 automatically, then I get mad.”

A reader named Nicole, with Type 1, thinks that “diabetes is diabetes. We all face the same challenges and choices once diagnosed with it.” Others disagreed, like Jim Devlin, who finds “many more differences between Type 1 and Type 2 than there are similarities.”

It’s hard to live with any kind of diabetes, and the ignorance of people and even of doctors makes it harder. Pamtime, who has LADA, wrote, “I still meet people [who] lecture me on how to care for myself, or [say] that I should have taken better care of myself as if this is some punishment meted out by a higher power….ignorance is rampant…”

So as reader DFBabb asked, “Where do we go from here?” Some readers thought we should separate Type 1 from Type 2 by renaming everything but juvenile onset Type 1 as something else. As what, though? “Insulin resistant,” as suggested by Lisaann, doesn’t really cover it, as many people with IR never go on to full-blown diabetes. We could certainly use a better classification than the current Types 1 or 2, though. Should most people with diabetes be reclassified as “Type 3,” (or maybe Type 1.5), which might have less stigma?

How do we educate the public so they stop blaming people with diabetes for their problems? How do we get the media and medicine to stop equating diabetes with fatness or laziness? How do we get them to know or care about the diversity and difficulty of lives with diabetes?

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