Monday, November 29, 2010

Civil War? Why not make it a Revolution.

I've been watching responses to the Chicago Tribune's Diabetes Civil War Post pop up for a few days.

If you haven't read the article yet, you should. Just google it (I tried to post a link, but it is not showing up). I think it reflects a lot of different viewpoints about the "types" of diabetes and the appropriateness of the names of our disorders. It also exhibits a display of incredibly inappropriate disrespect... and it makes me sad to think that a fellow Type 1 would so openly say inconsiderate things about individuals with Type 2 on a diabetes support site.

I have a few thoughts about the article:

Types of Diabetes have received their names because of their similar symptoms. Diabetes mellitus originates from words meaning "honey siphon," essentially explaining that the body was siphoning out sugar through the urine. It was coined long ago, before we understood the intricacies of the disease- that there were different causes for the symptoms of thirst, excessive urination, and wasting away that had historically been associated with this type of illness. It made sense. Consider, even, the condition Diabetes Insipidus. Ever heard of that? Probably not, because it has little to do with our disease. The symptoms of the disease include excessive thirst and the excretion of large amounts of urine. But, it has nothing to do with insulin or the pancreas. It has to do with a deficiency in arginine vasopressin, or antidiuretic hormone. Similar symptoms. Entirely different disease.

I'm not sure it is fair to say that T1 and T2 D are quite so different. Similar symptoms? Yes. Different causes? Yes. Somewhat different routes of treatment? Yes. But... same general concept (blood glucose levels are out of range, because something in the body is dysfunctional).

I guess I'm trying to say that, historically, I totally get why these diseases were both named diabetes.

With that said, it is essential (both for the health and sanity of PWD and the ability of both types to get much needed funding for a cure) that those in power understand the basic differences between the two.

I also want to say this: from a research prospective, I can understand why there is a slightly larger focus on T2. (I should preface this by saying that yes, I find this disheartening, but that as a science-y gal, I get it.) Type 2 research has a lot to do with receptors. Those receptors don't necessarily want to let insulin do it's thing... but in most cases, they still exist. Type 1 research (and I mean research for a cure at the cellular level- none of this artificial pancreas business) is looking at an entirely different beast: regeneration of cells that have been destroyed. Which one sounds more daunting to you? I think that the community needs to realize that this is possibly one of the reasons that there is more research on Type 2. Is that a good thing? No. But it is a fact. Plus, I think it is reasonable to suggest that much of the research being done on Type 2 may lead to a greater understanding of Type 1. The system being analyzed is still glucose regulation... so it is plausible that insights from research geared towards Type 2 could still greatly benefit Type 1 in the long run. The reverse could definitely be true as well (T1 research granting a greater understanding to T2 research), but in all honesty, I don't see where this funding will come from, because...

I also get it from a public health prospective. There are way more people with Type 2 diabetes than with Type 1. It may not be fair, but it is definitely logical that a community should direct research towards diseases that have an impact on the largest percentage of individuals. And until we are willing to put pictures of kids with Type 1 suffering on commercials like St. Jude does with cancer patients... well, I don't see much of an option for getting extraneous funding from the general public for care and research. PWD and parents of PWD have an incredible amount of dignity when it comes to this disease. That is something that I respect.

As the minority, it is rational for Type 1's to be outraged. I routinely am. I want a cure, at the cellular level, desperately. I want a life without attachments to devices, without food requirements, without daily needs that I can't always meet for myself. I want to die of something other than complications from this disease. I want to be able to schedule my life around what I want, instead of when it is smartest to leave my parents' insurance plan. Of course I want those things. But at the end of the day... I get it. A name change may seem like a good change, but I also think it will be a confusing change. If we change the name of type 1, what will that mean for well-recognized organizations like JDRF and the ADA? Won't that hurt funding opportunities? Perhaps most selfishly, diabetes is a core part of my identity (by my choice). It is the explanation for much of what I do... and hope for... and work towards each day! Losing that identity, or changing it, seems like a confusing thing. Like a name change. Like a lost identity.

I respect the opinions in this article. I understand the outrage. I get the logic behind a name change. But at the end of the day, I don't really see the point. If awareness of T2 raises awareness about diabetes in general (which it does, since the vast majority of the public doesn't understand the difference between the two)... is being occasionally confused with the connotations of T2 (as correct or incorrect as they may be) truly a terrible thing? This Type 1 diabetic is unconvinced. I'd rather see a focus on respect and education about the differences, an elimination of terms like "bad type," and the realization that any research on diabetes is potentially helpful for both types... because they are, while intrinsically different, still quite related.

I'd rather see a Revolution than a Civil War... one of education and understanding, instead of a name change that could potentially lead to less funding and awareness in the long run.

1 comment:

  1. After reading the term Diabetes Civil War my first though was if one side wins can the losing side switch. That concept is about as silly as the concept of a civil war between two types of diabetes.

    I am a type 2, and when I hear the term "diabetic" I still think of type 1. This is probably because I am older and the only type of diabetes I had ever heard of when I was a young person was type 1.

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