Last week a friend from college called me and said their kid was diagnosed with Type 1 and that their world seemed like a thick fog because it was incredibly difficult and overwhelming to navigate online through all the Type 1 and Type 2 information. I remember years ago I signed this petition and thought it was a really good idea but nothing ever seemed to come of it. I am curious what other peoples thoughts are, and if its worth trying to pick it up again? Seems like it would be very arduous process, but you never know.
It basically was started by a couple moms whose children were diagnosed with Type 1 and they are trying to bring clarity to two very different diseases.
My endo mentioned he always thought it should be called Banting’s disease (the man that discovered insulin) in order for people to have more clarity. ESPECIALLY newcomers.
I am sure I am not the only Type 1’er that is told often that I can reverse my Diabetes…
This is a perennial topic of debate in the diabetes community. Though it seems innocent on the surface, it turns out to be like politics or religion: a subject on which people hold passionate beliefs for which they will (metaphorically) fight to the death. Over the years it has been a never ending source of acrimony that has produced numerous flame wars in online communities (including this one). Some of the “discussions” got so nasty that they resulted in people being permanently banned.
The real systemic problems we face are to do with research, funding, public perception and the urban myths that feed and sustain the prejudices and misunderstandings. Changing labels will not alleviate the confusion; it will just create one more layer on top of the roadblocks we already face, and consume energy that could be better spent attacking the real fundamental difficulties. As a very perceptive management writer once said, “No matter how you rearrange the beer glasses, you don’t get champagne.”
Hi, @Molly_S. I understand your friend’s observation. Even if there were only one type of diabetes, we would still be faced with widespread social ignorance about diabetes. It’s simple human nature in action. We, as humans, will not often devote time and attention to subjects that do not impact us. I know a lot about diabetes due to my 33-year front row seat, but I know little, for instance, about multiple sclerosis.
So, what we are left with, as people living with diabetes, is an ongoing effort to educate at least the people who have a functional role in interacting with people with diabetes. These would be coaches, teachers, school bus drivers, as well as many health professionals!
I don’t think this situation will change in any large way but making incremental improvements with people we come in contact with like friends, relatives, and coworkers, we can at least chip away at the iceberg of diabetes ignorance.
I agree with @David_dns, that the renaming of T1D and T2D will not reverse that situation. And I was neck-deep in that controversy here back in 2011!
I agree we can call it what ever and people will lump diabetes into one group that is human nature. just like there are different types of strokes, cancers, and heart issues causing chest pain. People just hear stroke, heart problems and cancer and lump the categories into one for each disease process and if you aren’t involved with someone that has the issue they are not going to care one way or another or try to find out there is a difference. I’ve been a nurse for many years and tried to explain differences in dieases and it goes on deaf ears because they believe what they have heard for years and then use knows nothing.
Nobody cares what it’s called until it involves them, so it will naturally be a heated discussion.
How about: “This Sucks 1” & “This Sucks 2”?
A new diagnosis of Type 1 is overwhelming regardless of the name. I suspect that even if it were called something else, your friend would still be overwhelmed trying to sift through all the information online. I’m glad your friend is in contact with you and hope they find the information and support they are seeking. Things will seem less overwhelming with time (as you know!).
I feel bad for these two mothers. Their children were were criticized with stereotypes about diabetes. Unfortunately these mothers didn’t step back and ask whether these stereotypes about diabetes were wrong, instead they leap to the conclusion that these stereotypes were correct about type 2 and not about type 1. Sadly, you cannot reverse or cure T2 and nobody causes their T2 by sitting on the coach and not exercising. In the end, this petition came off as hugely insensitive and failed. What is really sad is that there continue to be those that didn’t get the memo.
As a t1 for 43+ years, I could never support such a name change. We come to diabetes on different paths, but post DX it is the same road. With so many causes of diabetes the outcome of giving each a specialized name with be much more confusion.
Brian, Respectfully, what research shows that T2D/insulin resistant diabetes is not associated with lifestyle factors? Or that it is irreversible? Your suggestion goes against well established medical knowledge, and is dangerous in our society. Genetics are an important factor in T2D, but they are not necessarily deterministic. Long-term T2D often is irreversible, especially after exogenous insulin is required, but I am aware of patients who successfully normalized HgbA1c and no longer required diabetes medications. Stigma is bad, but hopelessness is worse.
There is no winning of this discussion about the reversibility of T2. It both is and it isn’t depending on at what level you look at it. It is reversible in the sense that if you strictly follow the guidelines of lifestyle there is the possibility that you can reverse the symptoms of T2. If you continue to follow the guidelines you can possibility live a symptom free life, but there are no guarantees.
Then there is the other way of looking at it. There are a lot of people living a poor lifestyle that are not T2. By the logic that lifestyle is the only culprit they all should be T2. There is an underlying factor the causes T2 folks to become T2, that is the part that is irreversible. There is a chance that you can overcome that factor with lifestyle change but that factor, the disease, is still there waiting.
Throw in the T2 folks that are slim and trim and still became T2 and the picture becomes even more cloudy.
When you consider the fact that the same actions are needed no matter how you look at it, this discussion hardly seems worth the effort.
First, you can’t prove a negative, and asking someone to is—even giving maximum benefit of the doubt—at best disingenuous.
Second, as Gary says, this is a no-win debate. Both sides can marshal suggestive evidence that can be interpreted to show apparent correlation, but correlation is not causation. And people have mostly unshakeable views on this question, so a meeting of minds is rare. Flame wars, unfortunately, are not.
Third, the debate is itself counterproductive. It’s a diversion that consumes precious time and energy that could be better used actually helping people cope, fixing our hopelessly broken system, and actually doing the hard research.
Yes, we have well established medical knowledge, but we also have “interpretations” by so called healthcare professionals. Unfortunately, some of those interpretations border on “alternative facts.” Here is what we know from the Diabetes Prevention Program after 15 years:
At year 15, the cumulative incidences of diabetes were 55% in the lifestyle group, 56% in the metformin group, and 62% in the placebo group.
I have written about this before. These were pre-diabetic patients. The majority of patients still progressed to full-blown diabetes and the differences between “lifestyle” and doing nothing was minuscule. The Number Needed to Treat (NNT) was 14. An NNT over 10 suggests that the intervention has a high placebo effect, a low cure rate, goes away by itself or actually sabotages the cure. All berry, berry bad things. The Intervention does not help which is a huge red flag that T2 is not caused by lifestyle. And association is not the same as “cause.” It is more plausible that insulin resistance is the cause of T2 diabetes.
Don’t get me wrong. I strongly believe that you can manage your diabetes by restricting carbs and keeping your blood sugars normalized. I just don’t believe that lifestyle and being overweight “causes” diabetes. That is a “wrong” interpretation of the medical knowledge and is harmful in just so many ways.
I understand a conversation along these lines can quickly get carried away and become non-productive. However if it is able to stay focused and away from name calling and such, I think the conversation itself can be helpful.
I certainly have found some things said in this particular thread to be informative.
As I come from the T1 side of the house, it would never have occurred to me that anybody would be scared or hesitant about insulin. A different perspective that I have not considered previously !!!
From the T1 side of the house, I do understand why someone would be hesitant to use insulin. Too much and I’m at 40 and sinking fast, too little and I’m 350+ and feel like crap at either end.
There is the terrible and totally unfair assumption that for a T2 going on insulin is the ultimate failure. This goes along with the media and insurance misconception that all diabetes is a “lifestyle” disease caused by being a couch potato and if we’d get off our keister and exercise and eat xxxxxx diet we could manage our disease and bring down everyone’s health insurance premiums.
