Hello. A fellow T1 mom, Jeanette Collier, and I have filed a petition to revise the names of both T1 and T2 Diabetes to more accurately reflect the nature of each disease. We tried to do this in a way that benefits both the T1 and T2 communities and helps protect our T1 children from dangers caused by the prevalent misconceptions.
We are 2 weeks into this and have over 2,300 signatures from all over the globe. It has been signed and promoted by several well-respected individuals within the D World:
Dr. Camillo Ricordi of the Diabetes Research Institute (DRI)
Dr. Stephen Ponder, Ped Endo
Dr. David L. Katz, Director of The Yale University Prevention Center (he was on the Katie Show and Good Morning America last week)
Riva Greenberg, Speaker, author and health coach
Bret Michaels, via Life Rocks Foundation
Dr. Ricordi left this comment when signing:
Camillo Ricordi MIAMI, FL
“The confusion generated by the same name for two completely different conditions has been a problem for decades … time for a change (at least in the name)”
The response we have received so far has been amazing, but additional support is still needed to bring our efforts to the forefront. Please consider reviewing our petition via the attached link. If you agree with our cause, please sign and share. We need as many signatures as possible to make this happen.
I like the idea of coming up with catchier names but am not sure what would be catchier than the name we've been using for almost 2500 years...BCA doesn't quite grab me. Type 2 involves *a lot* more than "insulin resistance disease" implies so that wouldn't be particularly accurate either. A few years ago I suggested T1 be changed to Type X, since it sounds cooler and then let T2 be T1 so it would provide them first-class nomenclature, since there are more of them.
Lots to read in your petition and I may have missed the fact, that it is not only children , teens who are diagnosed with type 1 ( as we still call it today ) ...I was 42 plus and know of others who were diagnosed over the age of 55 .There are lots of misconceptions about diabetes and even the use of tools ..A maitre D in a restaurant in Palm Dessert , CA said to me a couple of months ago, while I was pressing my insulin pump buttons , bolussing for the food : I have not seen a pager for at least 20 years .Some more educating , even while on holidays :)
I agree Nel. I looked through it and finally found the "some Type 1's are diagnosed as adults" amid all the emphasis on children which to me is another form of perpetuation of incorrect stereotypes.
I'm a Type 1 who was misdiagnosed as Type 2 simply because I was 58 years old. I too try and educate people about the differences and I think that's where emphasis should be: On EDUCATION of medical personnel and the general public. Stop saying "Diabetes" when you mean "Type 2". Use the correct terms. Explain the differences so both children and adults receive the correct treatment. Whatever progress we've made on doing that in the last few years will be lost if we start again with new names. It isn't the names that's the problem (though we're well rid of "juvenile diabetes" as it was blatantly incorrect). The problem is ignorance and the solution is EDUCATION, not name changes.
I signed this petition. While reading through it I thought that the authors cleverly decided to omit any suggested name changes and just try to advocate for a name change. But they did ultimately suggest one possibility each for T1 and T2:
The author's made a strong case for making a name change. As two mothers of T1 children, they fear that the confusion and ignorance of the general pubic, as well as medical providers, put their children at risk. I agree.
Here's the comment that I left when I signed:
"Words and names matter. A name change combined with a long media campaign to educate around the name change will help reduce confusion and ignorance while it increases personal safety, particularly those who depend on insulin for life and may not be able to speak for themselves."
That being said, renaming Type 1 diabetes as Autoimmune Beta Cell Apoptosis (BCA) Diabetes is not a good name change. I have a fairly large vocabulary and had to look up "apoptosis." It means, "a genetically directed process of cell self-destruction." Expecting the media (a critical ally in any successful name change) to figure out how to pronounce "apoptosis," much less the general public target audience is too much to hope for.
I don't have any suggestions but we can't just leave the replacement name up to the medical community. The suggested name to replace T2, Insulin Resistance Diabetes, seems much closer to the mark to me.
I know we've had this discussion here before and it hasn't resolved to anything resembling a consensus. We do need to make a change. The only thing in question is how long it will take to arrive at names that enough people will agree to and then the time required for an effective marketing campaign to take root.
THANK YOU for taking the initiative and doing this. so tired of everyone assuming they're the same thing. TV Commercials, media, non stop talk about obesity, diet, lifestyle focusing on diabetes with NO mention of Type 2! So tired if hearing, "You're so thin, fit..how can YOU have diabetes." They're two totally different Dx. Even my endo told me, "You have nothing in common with a type 2 diabetic, don't compare, they're not remotely the same."
Type 1 and Type 2 do seem to be joined at the hip and I don't see how you can separate them without totally taking the word Diabetes out of the name of one or both. As it stands now you could change the names to "Fruit Loops Diabetes" and the other to "Purple Diabetes" and the news media and general public still would not know which is which. I know those names are silly and extremely different except for the Diabetes part and that's the problem, they would still be confused.
So my question is who gets to be called diabetic. The name diabetes at it's root is a description that fits both types. I'm open to suggestions, we do need better descriptions.
I agree that education is the answer. The best way to educate is with a clear and concise message without any confusion about the terms. Unfortunately, that “clean slate” opportunity has long ago expired.
What we face is dealing with the general imprecise vernacular around the word “diabetes.” That’s the word that I think cannot be erased in the minds of the public. So we are left with playing with the adjectives to make the distinction. The petition authors suggested Insulin Resistance Diabetes or IRD for Type 2. Maybe describing Type 1 as Autoimmune Diabetes or AD would do the trick.
Even if the medical community, the advocate community (ADA and JDRF), and the patient community could agree on terms, it’ll still take years and lots of dollars to make the change and make it stick.
Is it important? I think about my possible future as a geriatric T1 (many, many, many years from now!). It seems very plausible to me that the diabetes terminology confusion could play a role in making a life-threatening insulin dosage mistake. Especially when I see all the demands placed on medical professionals and the hospitals assigning more and more tasks further down the credentialed ladder.
I agree about the need to educate people, I just totally disagree at the way to go about it. Cultural change happens very very slowly which is why an all out campaign of education is necessary, and time energy and money spent on "new names" is a waste of all the above imho. When JDRF didn't change their name to Type 1 I was very bothered. As someone who has suffered from the incorrect stereotype of "juvenile diabetics" I wanted something that was inclusive. But as I worked with JDRF to start a Type 1 Women's Group I asked them about it and, while acknowledging my concerns, they said that the "name recognition" would take years maybe decades to catch up to the detriment of the work the JDRF does at raising money and awareness and researching a cure. Instead they worked on providing more services for adult Type 1's as well as children.
Those names in the proposal (though I understand they may not be the ones chosen) are absurd! Who can remember or pronounce them! It would be a lot more useful to pick something descriptive and simple like "autoimmune diabetes" and "insulin resistant diabetes". Do we need to do away with the term "diabetes" altogether? That would be like doing away with the word cancer and would be more divisive. Yes, they are separate conditions but have much in common. But bottom line, I think it is no harder so explain the basic differences between "Type 1" and "Type 2" than it would be between "autoimmune diabetes" and "insulin resistant diabetes" (or whatever). And we wouldn't lose whatever significant progress has already been made on educating people about Type 1 and Type 2 by starting all over again with new terms....yet again! Education, education, education.
When I was misdiagnosed I started my search to find out what was wrong (why the oral meds had stopped working after 15 months.) with a 15 year old book on Diabetes put out by Johns Hopkins that someone had given me. It had a simple chart of the two types, what caused them, how they were treated and what age people could be when diagnosed. It was about 1/3 a page. It led me to the "aha" moment that I could, in fact, be Type 1. That's all it takes to begin the process of educating. Something that simple.
The names have been changed how many times now? I know of Juvenile Diabetes, Insulin Dependent Diabetes Mellitus and Type 1 so that's three. Has that helped clarify things or muddied the water? I think the latter.
Another reality here is that Type 1's are about 25% of the Diabetic population. Not 10% as previously thought. But that is still a minority. And with the rise of Type 2 in both children and baby boomer adults, it is where the attention is going. Yes, I hate it whenever I hear another commercial on tv saying "If you have diabetes..." and then talking exclusively about Type 2 issues. But some of that is just reality of where the interest lies. I'd be happy if they just added "type 2" when they ran those ads.
for example, just saw a Glycerna commercial on TV, some overweight woman stepping on - off scale, talking about how her doctor keeps telling her to lose weight, exercise, etc...to help control her 'diabetes' and drink this 'shake'. I sent an email to the company asking them to please distinguish between type 1 and type 2; they're clearly targeting type 2's.
When the term "diabetes" was invented, in 230 BCE, T1 would have died quickly but T2 would have probably not been all that much outside of the norm, as the life expectancy seems to have been 28 (link). The fact that so many of us are around these days is an amazing triump for medical science. I am not totally against some new names but I think that they'd have to be *really* catchy and stuff like LADA/MODY/BCA don't strike me as being really marketable. I'm in the midst of taxes right now but am thinking about it quite a bit...
When I got my diabetes, T1 "owned" the word. And I just can't understand why anyone cares what kind of diabetes folks have, unless it's the doctor or healthcare provider needing such information. I guess I just don't run into common discussions about diabetes other than on forums or when I see my doc who knows my type.
I think this is a valid idea in principle, but I also think you may be expecting (hoping) for it to make more of a difference than it really will. People outside the D world (which is to say, most people) have only the fuzziest notion of what diabetes -- any form of diabetes -- is really about. Most of that stems from lack of education and understanding of what is, after all, a complex subject. Only a little bit of it derives from the names.
So I fear that this only attacks 10% of the root of the problem. Will it make some difference? Probably. Will it dramatically reduce the confusion and misunderstandings? Personally I doubt it.
Why not start by educating people, because as David says, lack of education, not the "wrong" names is the problem. In Sarah's example above, if that person would start saying "Type 2" in that commercial and maybe adding a sentence as to what that means, it would go a long way to educating people as to the nature of the two different conditions!
A note on LADA: Most of us don't think of that as a separate condition. LADA only refers to etiology. It is just a slower onset form of Type 1. The only time the LADA distinction mattered to me is when I was diagnosed so people wouldn't say, "you can't have type 1, you didn't have DKA" in addition to "you can't have type 1 you are too old". Six years in I consider myself "Type 1" and only explain how I got there if it's relevant.
Hey, think about this, Gary: If we eliminated "diabetes" and went with "the fruit loopers" and the "purples" we wouldn't all be here on TuDiabetes!!! And though we scuffle a bit sometimes I think we all benefit from being together. This morning I ran into someone online who was just diagnosed with Type 2 and referred her here. I forgot to tell her to "just click on forum" and read all the posts as we each learn from each other.
My Taber's says apoptosis (from ptosis, a dropping) is a disintegration of cells into membrane-bound particles etc. phagocytosed by other cells. The process may be important in limiting tumor growth. Sounds sorta far away from diabetes, a general term for diseases "characterized by excessive urination". When it treats diabetes, it goes on to various kinds of these diseases characterized by excessive urination of which there are many, many listed, the differentials for which are left to the individual practitioner in his/her wisdom and experience. That's why it's an art and a science.
Medical words are generally in cahoots with Latin, biology, and organic chem. When we add one, we add a whole slew of related problems! And whatever is added must be heartily accepted by the professions using it day in and day out.
A couple corrections, Jamie: Insulin resistance is not generally a characteristic of LADA/Type 1, that is a misconception I've heard before.Though any Type 1 can go on to develop IR. And yes, there is a difference in the speed of destruction of the beta cells, though sometimes the impact of that slow destruction is very similar to the "honeymoon" part of "traditional" type 1. Also, some people have more not less trouble controlling their BG when they have variable or unpredictable endogenous insulin production. But bottom line, once the beta cells are destroyed in a period of a few months to a couple years, management is typical of any other Type 1. To repeat, LADA IS Type 1. My diagnosis for insurance/Medicare, etc is "Type 1 Diabetes".
So much of this discussion is “inside baseball,” in that those of us that visit this site know so much more about diabetes (all variations) than the average member of the public. What astounds me is when I observe medical ignorance about diabetes, in all its forms, in doctors, nurses, diabetes educators, and dietitians. If the medicos can’t reliably perceive the patient before them then educating the general public is daunting.
I was not aware of the insulin resistance component of my T1D until it happened to me. And I took years to figure it out. The four endos that I consulted in that five year period never came to that conclusion.
You make good points. I suspect that T1 and T2 came about simply because the committee couldn’t agree to the actual names, the same disparate sentiments that divide this discussion!
