I totally appreciate your thoughts. But to challenge it, what if there was more funding to a disease because it got more awareness? And then, would that not directly impact you if you live with it every day? Just a thought! I know it's also important to limit the influence other people's thoughts have on your self!
That's the real question,and a really good one, isn't it? Will renaming what we have compared to what other people have lead to more understanding and, ultimately, the kind of attention that might someday lead to a cure?
Really, it's more of a case that the general public is misinformed about diabetes in general, not just type 1 versus type 2, or whatever. I don't think seperating the conditions into more easily categorized conditions is going to make understadning any one of them easier.
Considering that, if you really want to draw a clear distinction between just two conditions, our "type" is less than 10% of the total, you're probably asking to be marginalized at best, or worse case scenario, completely forgotten about by the general public. I can count on one hand the number of times, in my lifetime, that I've seen another type 1 diabetic, other than myself or a personal friend, openly managing their condition through testing, injections, or any other methods you can think of out in public. I'm not surpised when it falls squarely on my shoulders to provide any kind of education regarding my condition.
I'd prefer to have an open-minded and receptive general public that is willing to learn about and be sensitive to the needs of anybody who has a condition that must be managed in a public manner, whether that's type 1 diabetes, type 2 diabetes, autism, or whatever.
Short of that, which we are wayyyyyyyyyyy short of, I just don't see the point of worrying about what the general public thinks at all.
FHS, you brought up something that was also my realization. About 18 months ago, Nate had just started the pump over the summer and was now starting High School, students and parents were touring the school and we ran into a family that we had known from his Elementary School. We updated each other, me with a surprise second child and Nathan's diagnoses. When I took a breath, the husband said he was Type 1. Shocked, I wanted to know how he managed, he wasn't as open as I am about it. He did not look like he was carrying a single thing with him, that first struck me as odd. Later talking to his wife a few times throughout the year it seems he has stayed pretty old school. On Regular Insulin, not on MDI, has neuropathy and retinopathy. Doesn't test much. She didn't know his A1C and didn't know Nate's 5.5% was good or that they even allowed kids to have pumps. It was my first eye-opener, that not everyone manages as the way we were taught or uses all the resources available. I joined TuD at the end of that year and found that that's how it had been for many here but most here have embraced the tools and resources for better control. I wonder what percentage of that 10% are still doing it old school and are not managing well.
What would help them?
I think that it's a pretty high %age and I'm not sure what might help them? I suspect that some people might get in the habit of feeling "OK" and reporting to their doctor that they are "OK" and don't want to change anything and keep rolling along wherever they're at? I did that for a long time. I'd still get high 5 to low 6ish A1C scores most of the time and "pass" but didn't feel that well.
Well, I understand your feelings, but when I think about it, T1 is the one that should keep the name, because it is a well-defined, single disease, whereas, as bsc said, T2 is a garbage can full of "other" diseases, which vary in cause, treatment and prognosis. Nobody even knows what all the different kinds of T2 are.
And don't you think all the T2s who don't fit in the box, like the thin ones, for example, feel just as 'orphaned" as you do?
I'm much more inclined to improve the state of public knowledge about diabetes, and, being one of those who don't fit in the box, I'd much rather be INcluded than EXcluded!
Are you sure you're not talking about metabolic syndrome for that 'garbage can full of other diseases'?
Hahahaha oh my goodness. THAT'S funny. Although something inside of me is diabolically opposed to that idea, it is still enjoyable to read, an interesting thought activity.
I guess I just don't think I could bring myself to say "Oh, I have CRAP" if someone were to inquire about my medical status, although I do believe it would pretty much cover how I felt about the condition.
But, yeah. No. Not gonna happen.
I think what is really important is EDUCATION - while I do agree that the nomenclature can create confusion, I think lack of education is deadly.
No, metabolic syndrome and its separate parts is just ONE of the many diseases that may or may not go into the T2 garbage can. Metabolic syndrome is, itself, a garbage can diagnosis, because you can have parts of it without having the whole thing -- my father had severe hypercholesterolemia, but was never overweight and never had hypertension, nor any indication of T2. But whatever he had, it resulted in early heart disease, and he died of his 5th heart attack at age 69.
There are also T2s who show no indications of metabolic syndrome -- there's a whole group of them here. That's what I mean about it being a garbage-can diagnosis -- who in the world REALLY knows what's going on with any individual diagnosed with T2, when, yes, the majority of them have metabolic syndrome, but there are a significant number who don't, but are demonstrably not T1?
Yep. I've been morbidly obese for years (I'm 55), however my heart just went through a battery of tests -- it's 100% OK. My cholesterol has always hovered between normal and low-normal. I have had low-normal blood pressure for all of my adult life except for the occasional episode of mild "white coat hypertension" -- if they care enough to wait :20 minutes and re-test, it's always normal. My triglycerides are always normal. Nevertheless, I've had severe reactive hypoglycemia my entire adult life and I was diagnosed with T2 ten years ago this May. There are lots of variations in T2 and these are (in my opinion) genetic variations. Given my lifestyle, age and obesity, there's no reason in the world but genetics that I should have perfect blood pressure, perfect cholesterol, perfect triglycerides, zero heart disease and such a tough time with insulin/glucose balance -- while a thin, fit, super-active and diet-conscious T2 might have high cholesterol, high blood pressure and all kinds of trouble with their heart. It's not fair -- it's genetics.
I agree that there is potential for lethal repercussions from lack of awareness... based on the fact that some are initially quite shocked to learn I am eating sugar for my immediate needs of survival, not in spite of my diabetes.
If those individuals were the only ones around if I were suffering a bad low blood sugar, I would be surprised to think that they would consider giving me some sugar, because all they hear is "diabetes" and think "the disease where you cannot eat sugar".
And I don't think I necessarily blame them, I blame the name, I really do.
Hence the call for a new name.
So, a new name, without the education to go along with it would result in exactly the same reaction from ignorant people. "You have Muglupsowaz? That means you can't have sugar!!!! Why are you eating that????"
I feel bad for all of us, because diabetes is so darn COMPLICATED, and there are no easy answers -- how many people WITH diabetes do you know who haven't got it figured out? (I know lots). If THEY can't do it, why do you expect the public to?
And the AADE says they can't possibly supply enough educators for the PWDs who need them, let alone the general public -- if WE don't get our faces out there, and educate, educate, and do some education while we're at it, The problem is NOT with the name; the problem is with the game.
And by the way, T2's face a LOT of the same crap -- you just don't notice it because you're not paying attention.
Couldn't agree more Natalie. Couldn't have said any of it better.
When we are learning a disease name, immediately our mind will start associating traits to it to understand it. Our minds compartmentalize the disease, right or wrong, according to the conditions or traits that seem most prominent. I am arguing that with a term like 'diabetes', many, if not all traits people know are based on type 2, most of which do not pertain to me as a type 1 diabetic. (And, in my experience I would argue that NONE of the type 2 traits people assume have pertained to me).
I am not suggesting that a name change will instantly educate the populations and clear away all ignorance. I am merely suggesting that with a new name, traits specific to type 1 will be able to have their own compartment in people's minds. It is an opportunity to have awareness brought to type 1, when I have often felt like its traits go unrecognized in the shadows of type 2.
Personally, I think there is zero likelihood of a name change. That said, as a fan of history including diabetes history, I think it is interesting that the original historical descriptions of diabetes clearly describe Type 1 diabetes (a person rapidly melts away to death; it is also interesting that none of the historical references mention the age of the affected). I have a book from 1958 that recognizes two types of diabetes, and even says "someday it will be recognized that they are two different diseases and will have different names." In the 1970s, the autoimmune nature of Type 1 diabetes was discovered. So there is autoimmune diabetes and not-autoimmune diabetes (and the "not autoimmune" is a big bucket!). Although people get upset about Type 1s wanting a name change, autoimmune diabetes is a different disease than Type 2 diabetes (disease = any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown). And it is more than just the general public that is ignorant of the differences; a huge problem is that the medical community largely differentiates Type 1 versus Type 2 based on age, not etiology: hence the huge number of adult-onset Type 1s who are misdiagnosed as having Type 2 diabetes. There, the distinction is critical--the consequence of misdiagnosis and mistreatment is rapid onset of diabetic complications and even death from DKA. So for me personally, I just see it as important to increase the medical community's knowledge, so that all people with whatever type of diabetes get the correct treatment.
So many people do not even know that there are different types of diabetes - so many people (with/without) diabetes do not understand the disease...
Educating on even a basic level is difficult and costly, but it NEEDS to be done, and I would rather see all of the monies donated to/spent on diabetes to go to research and education than to an overhauling of the diabetes PR machine.
I agree with Melitta; two many name changes would just add to the confusion. And many people are still very much stuck on "juvenile diabetes" (Now JDRF wouldn't have anything to do with that, of course..lol). I know this well as someone who was misdiagnosed type 2 because I was 58 and when I told my cardiologist I was type 1, I had to stop him from talking about my risk factors due to "having had type 1 all my life".
You're right,Valerie, that "type 1" doesn't say much and we will always be thrown in with Type 2's in the public's mind. Try being a 63-year old type 1! But all we can do is educate people in our personal lives and our communities. Even on here, many people are still quoting type 1 stats as 10% of the population, when, if you include adult onset, it is more like 25%.
And bottom line is, most people don't know or care to know all that much about a condition that doesn't affect themselves or someone they love. So I've created short version answers, shortest version answers and then wait and see if there are more questions before I give more detail. And I also tell people "we are all different" even within the same type to help reduce the stereotypes that "all diabetics" or "all type 1 diabetics..."
Me, I'm in the mood for telling people I have the "■■■■■■■ evile" and let it go at that. I can't remember who coined it, but I think it was in the 17th century, and it's really quite a good description, don't you think????? LOL!!
:) Natalie ...and I stand by what I said earlier in this discussion
So Bec, do you mean to say there is a difference between publicizing a disease, and research and education? Or, do you think there are some cases that they come hand-in-hand?