Monday, April 15, 2013

Name changes for T1 and T2?

There is a petition being circulated by 2 moms of children with T1 advocating for a name change for the two types of diabetes. The URL is
I  read the petition in its entirety, but I still disagree with it. Let me see if I can be organized about my reaction:

1. Dangers to T1 children are not caused by misconceptions about diabetes having been caused by the media attention to T2, but rather by ignorance about diabetes altogether. For example, T2s can and do have pass-out lows if they are on medication.

2. T2s frequently end up on insulin, because they DO experience beta-cell death, and this causes them to have all the same kinds of hassles that T1s have.

3. Care for anyone with diabetes depends on their personal needs, not an academically convenient type. Some people with T2 do not respond to oral meds, or have adverse reactions to them and go on insulin fairly soon after diagnosis, while some T1s develop insulin resistance and become obese during adult life, and doctors are increasingly using oral meds in addition to insulin in order to take care of them adequately.

4. There are more types than just T1 and T2. The fact that scientists have yet to discover exactly what is happening in the garbage-can diagnosis that currently constitutes T2 doesn't mean that they are all homogeneous. Plus there are other types such as gestational diabetes, ketosis-prone T2 (which is ALSO called idiopathic T1), stiff-man syndrome, thin T2, LADA, etc. etc. etc. Diabetes is actually a spectrum disorder, not an either/or.

5. MOST of the dissension between the "two" diabetes communities comes from parents and young people who react negatively to media presentations which discuss T2 without being specific. We, at Diabetes Advocates, work to educate the media -- all it takes is adding the words Type 2 to their presentations in order to educate people correctly. We feel that this would be a better solution than trying to change names.

6. Most T2s feel very denigrated and stigmatized by organizations and people who focus SO hard on T1 and don't have the time of day for T2. Organizations, as opposed to the media, almost exclusively focus on "the cure" for T1. T2 doesn't matter. The media articles are hard enough on them, and they need the support of T1s, not being thrown out into that stinky, discriminatory T2 garbage can.

7. Jeffrey Brewer, president of JDRF, IS trying to include adults with T1 into JDRF activities, but it hasn't had much effect. As a LADA, diagnosed at the age of 45, I feel very left out of the child/family-oriented T1 activities, but ALSO the diet and exercise activities aimed at T2. I feel very much like an orphan, and I want inclusion, not exclusion. Your division of diabetes into 2 types leaves a lot of us completely out, especially when we DON'T fit into the convenient etiologies which may change tomorrow. I was never a child with diabetes, and am not a person whom diet and exercise will help. I tried that, and it turned into a full-blown eating disorder, because I was trying so hard to fit into a box. It was like, if I could get thin enough, then I could accept that I had T1, and not T2. I lost weight, but it didn't work.

There is another thoughtful blog on this issue at which is written by Lee Ann Thill.

OK, this has turned into a rant, but the conclusion is that a name change will NOT help the greater diabetes community in any way, but more understanding from people concerned with one type for people of multiple other types would go along way toward gathering our strength to not only fight for a cure (which would only be for T1), but also help people live with the vastly difficult emotional burden that diabetes imposes on all people affected by it.


  1. This post has me in tears! As a Type 2 diet/exercise controlled, I also feel alienated by the diabetes community. Type 2s typically blamed for our condition. However I did *nothing* to deserve this! We need to take this energy and use it to educate and advocate, not fight among ourselves!

  2. I am fully aware of and sympathize with the stigma and discrimination that T2s face. Which is why I wrote what I did. A couple of resources that you could access that might help are T Minus Two, a blog written by Bob Pedersen, who is an obese T2, but who is very positive minded, and funny to boot. There is also a mailing list called, which is primarily populated by T2s, and has a lot of intelligent people on it, including an endo, who is very supportive. In addition, although is mostly T1, there are a few T2 groups on it, and other groups dealing with depression (common in ALL diabetics), and emotional support. I want you to know that my heart is with you -- I'm glad you are able to control with diet and exercise, but know full well that it is a struggle, and even though you are not currently on meds, the diabetes has NOT been reversed, just controlled with a lot of work and attention. I salute you and congratulate you for your hard work, and hope for the best for you in the future! "-)

  3. First, let me say that I think you are my secret twin sister! Adult onset type 1 at 46, on a pump and my beta cells are finally at the point where I really MUST bolus for everything that goes into my mouth - even 10 peanuts. I don't always do that, and I sometimes wince when I take my pre 'meal' BG reading. Wincing is coming more frequently these days although I don't feel like I'm eating more...

    T2's get so much crap, I can't imagine how bad it must feel for them to be blamed for a faulty biological situation. I get some 'overflow' from that, since there are heaps of people who simply don't understand that there are different kinds of insulin malfunctions, and that oddly enough if I'd had one less cookie when I was 10 I'd be perfectly fine today.

    I have to say that I don't find a lot of support for T1s either. I'm on a couple of mailing lists but... but nothing really strikes that fire in me. And of course, maybe that's me. I'm a classic Meyers-Briggs INTP, so socialising isn't really at the top of my skill set :-(

    An awesome post Natalie. You sure help me think.