Has there been anyone else who feels the name 'type 1 diabetes' is lacking in name? I did a quick search and found this article from last year:
Wanted: A new name for type 1 diabetes:
I feel the need for a change. I guess I'm just annoyed that people assume all sorts of things when they discover that I'm diabetic. Because of all of the connotations of type 2 attached to the word 'diabetes', I feel like many are unable to appreciate that there is a less common form of diabetes, with with distinct needs and patterns separate from the most prevalent form. To support this distinction, I almost feel that there is a need to get a distinct name for this condition, and that this will be the only way that most can realize the distinction between the two types of diabetes.
As for the name itself, I'm somewhat at a loss, but "Beta depletion" keeps coming to mind. It's just lacking some 'zing', you know? It would be difficult to make into an adjective (compared to 'diabetes' as a noun, and 'diabetic' the adjective).
I agree that there may be benefit in a name change, but I just do not think it is feasable. I guess you are more optimistic that I am. I just consider these another issue of being diabetic. People mistakenly thinking your the wrong type, constant management, blood stains on clothes, etc.
For my own amusement and to not have to explain diabetes to everyone I have been telling some that I am "Carbohydrate Challenged". I explain my condition very truthfully. I do not digest carbohydrates well, therefore I have to limit and monitor every carb I eat and if I am not careful I will end up feeling pretty bad. Most people take this definition and do not ask more as it is sufficient for them. Some ask more and these are the people that care and may "get it". I am happy to answer all of their questions.
As a Type 2 Diabetic, I totally agree with you. Currently, a diagnosis of T2 means that you don't really have diabetes but something like bad lifestyle syndrome. While the medical and insurance communities are aware of the difference, the general public including many employers are not. As this lifestyle issue is generally associated with age, it stands to reason that the discrimination towards t2s would be directed t1s as they age. This is just wrong!!!! If a name change would change the focus back to a cure for T1 then it should happen!!! I truly believe the cure is close.
That being said, I'm thankful that we are all able to come together here. I have recieved so much support and information from my T1 friends on TuD.
Well, the way they diagnose things, it is probably reasonable to name T1 for the mechanism somehow. It is an autoimmune reaction. I would vote for Autobetes and those having it could be Autobetic. And then since T2 is a diagnosis of exclusion, we could name it Otherbetes and then I would be otherbetic.
And then I would like to rename non-diabetic people. I'd like to do what the autistic community has done, they call "normal" people neurotypical. We could call nond-diabetics "glucotypical."
I like the idea of Capin101's "carb challenged" description and the "glucotypical" nomenclature that bsc suggested. Perhaps I will just start telling people I'm not glucotypical, then explain as Capin does.
In my teens, I was often bitter that the response I typically got when explaining that I was diabetic was either "you're too young for that" or "you're too skinny for that!" I'm over it now, and agree with Capin that a name change just may not be feasible. But who knows.. Maybe it will happen one day and we can throw a GlucoAbNormal party to celebrate!
When I was a kid it was "juvenile diabetes". Well, I'm middle aged now, and no longer a kid, but I still have it!
T1 means some surprising things to some people. I've been challenged "you can't say you're a T1 unless you show me your C-peptide and GAD results, without those you could be a T2". Wow, let's see how much we can raise the entry bar for a disease that none of us wants!
I think that IDDM (Insulin Dependent) captures a lot without delving into details about C-peptide-this and GAD-that. Adult T1's and T2's that use insulin, may have some different history, but they both depend on insulin and may have similar risk factors for a wide range of complications.
I couldn't care less. What the general public perceives has no effect on how I have to manage my condition. Really, it doesn't matter how much information the general public receives because there will always be people who think they know more about your own condition than you anyway. The only thing that matters is whether or not they feel motivated enough to demonstrate ther own personal level of ignorance. Changing the name of our condition won't change that.
At this point in my life, I feel that the best way to not be bothered by what people think is to not be bothered by what people think. If they are curious, I answer questions to the best of my ability and to the limits of my patience.
Not to be mean about it, but the very idea offends me. There should be no stigma or false assumptions tied to ANY form of diabetes.
The entire shame/blame game vis diabetes is sick, abusive, medically unsound and needs to stop.
This is the kind of nonsense I'm talking about, from the article:
"...Rebukes from the self-appointed 'diabetes police' are a sign of public confusion about the differences between her incurable disease and Type 2 diabetes, which is preventable with healthy eating and regular exercise, Ms. Abramson says.
“But we’re all given the stigma of being overweight and lazy,” she adds, “regardless of the type of diabetes we have.”..."
All Type 2's are "overweight and lazy"? Huh.
Then I guess all the millions of people (like my mother) who NEVER exercise and don't develop Type 2 are magically "not lazy" even though they put in zero hours per month on exercise? Meanwhile, the many T2's I know who work out and run daily are "lazy"?
It's a gene-based disease. If you don't have the genes, you don't get it.
If I could pick one, I agree "autoimmune diabetes" is the most accurate. But I really don't care. Type 1 is fine; it is sure a step up from "juvenile diabetes" (this from someone who was initially misdiagnosed because I "couldn't possibly have juvenile diabetes at age 58". 99% of the time on tv ads, etc, you hear "diabetes" without any type specified. I yell "type 2!" at the tv because that is what they are referring to. Is it going to make a difference that we are now recognized to be 25% of the population with diabetes, not the 10% previously believed? I doubt it, especially with all the baby boomers being diagnosed with type 2, and swelling the ranks. I'm not all that hopeful that the public will recognize the difference between the two types no matter what we call them.
i don't care so much anymore either. I do ALWAYS say I have type 1 diabetes, or people will automatically make that clarification, "type 1 diabetes, right?" if not..I too get the, "how can YOU have diabetes", you're too skinny to have diabeties"...blah, blah, blah. Or I'll say autoimmune diabetes, to really throw them. HA! Actually, there HAVE been discussions about this, through JDRF, about changing the name..but, as long as we've got the type 1 D code, what does it matter.
I like "Databetes" since we are awash in so much of it.
I have not read anything on the Canadian Diabetes Association's website , neither have I heard it being discussed ..this is what Dr. Ian said, Jan 2011, quote from the Globe and Mail paper .." Since outdated terms – “juvenile” and “adult-onset” – are still being used inappropriately, Dr. Blumer says, renaming Type 1 would only add to the confusion. “I just think it would be chaos.” ... I am starting to agree . When I do my advocacy , depending who the audience is : it's for all people with diabetes OR it is for insulin pumpers ( could be type 2 and 1 ) , if I am discussing me : it's about type 1 diabetes ...some get it , some have no clue .
"Diabetes that is NOT my fault!" I am so tired of being something no one understands.
Fantastic. I have become a data diva! Good idea, AR!
How about "Dabblebetes" since we have to dabble in endocrinology, anatomy, nutritional science, pharmacology, cellular biology, genetics, etc. etc. etc.?
I think explaining the difference between the two types only creates more awareness of how serious the disease really is.
I was diagnosed as a "juvenile Diabetic" too I have too since grown up The name change from JD to TYpe 1 was a learning curve for me. I will get used to another if there is one though
Oh my goodness. I LOVE this post.