Please take the time to review the TuDiabetes values here.
They include
"Diversity and Respect
We value diverse points of view. All people touched by diabetes are welcome. You may find opinions and positions that are not similar to yours and it's OK to disagree. It's just not OK to do so in a disrespectful manner. If you are unsure about whether something may be disrespectful to others, try to put yourself in the shoes of the other person and consider how you would feel if you were on the receiving end of the comments/contribution you are making."
I'm adding to my comment: This is where we come in - people with diabetes - any type. We contact our local news media in preparation for the coverage of National Diabetes Month. A real public service can be done if the general public were informed as to how diabetes is diagnosed, when it presents (including all ages) and arm people with enough info to ask questions. I accepted the initial diagnosis of type 2 because I was the general public. I was 30 years old, so obviously juvenile (as it was called then) couldn't be the issue. I didn't know until later to ask if I had any people with type 2 in the family (I don't - and my family has lots of medical people in it they know when people got their first zit). That's because I had never seen any info on diabetes. Wait a minute, I knew Mary Tyler Moore had it - but I didn't know she got it as an adult.
We can make a change, simply by contacting the health reporters in our area and letting them know the public service they would be providing if people had enough info to ask questions of their doctors and their families (regarding family history)
Peace, Sarah.
To the OP - I have "diabeties" and have been "diabetic" for decades, so I've been around the block a time or two. In my years and experience, the products, the treatment, and the diabetic community have improved immensely.
I have learned not to expect much from the general public, my peers, or anyone who is not diabetic to know anything about my condition, or to delineate the differences in the types. I expect support, and answers from those who treat diabetes. A movie maker is not one of them, nor are the people watching the movie!
As I have already said, I don't know much about most conditions, and don't care to unless they happen to my loved one and I have a need to know. I would not try to tell a T2 how to roll, but I would recognize the condition and offer some camaraderie.
I was never misdiagnosed but that does not mean I don't understand. I hope your slight rant helped you :)
thanks, artwoman...:)
Perhaps the HIV analogy doesn’t work for you. It does work for me, but, let’s try a different approach. I was dx with generalized anxiety when I was 18. It is a serious disease that I have a genetic pre-disposition for, and I have been battling all my life – see my last blog. In the last decade or so, the drug companies have come up with some great drugs, and many people have been diagnosed with anxiety, but really are using these drugs to cope with a fast paced, modern, stress-packed lifestyle. I have to say it bugs me a bit because maybe if these people would take a lower paying job with less stress, or get their priorities in line to not stress over getting the material things, they wouldn’t need the anxiety drugs, which is not the case for me. Doctors give out these meds to both groups regardless of what the origins of the symptoms are.
Having laid this situation out, though, I would not take the time and energy to have the two different types of anxiety – let’s call one “stress induced” and the other, mine, “organic” – to be separated in the media or anywhere else in society, even though lifestyle is a bigger factor and more easily controlled by “stress induced” than “organic” people. What I think is paramount is that people are living in pain and even dying because of anxiety, and there is a horrible stigma with this disease, so that people who need help don’t get it. Education of society should be about accepting and helping individuals recognize symptoms and making help available, NOT that there is a difference between the two’s origins.
Doctors often don’t have the time or inclination to learn and treat the patients according to the origin of anxiety; it seems to be more about whether one drug works better than another for an individual and that decision is based on the doctor’s education and experience. I am sorry you were misdiagnosed, but education of the medical field to deal with the different (numerous categories within categories) kinds of diabetes is so much more than a name change, even if they are informative name changes. We have a bigger, more complicated fight on our hands with diabetes. Pup is right: we need to educate people about diabetes, all different kinds of diabetes, and we are so much stronger united. Because we know about diabetes better than most, do we not have some ethical responsibility towards helping others to understand the disease, so they can get the help that they or someone they love needs?
Sorry for the long post. And, Sarah, I appreciate the discussion. It helps everyone further articulate what each of us thinks about the subject - and that's a good thing.
I have been a type 1 for 37, almost 38 years. My aunt, mom and I have lived with type 1 since and 1936 and two of those deaths one at 12 years old and one at 46 have been awful. I am 55 and have lived longer than my two other type 1 family members. I live today because of research and because many of my brother and sisters type 2 have given time, and treasure so that I and others can live.
Now having said this. I have often faced difficult situations where people have told me i should not have eaten so much candy or drank so many cokes. When I am forced into discussions like this I am I also become angry. But I am also reminded of our similarities instead of differences.
I am also reminded that as a type 1 I have benefited mightily from the issues facing type 2 diabetics. When the ADA goes to congress they talk about the number of diabetics in this country. At the same time they take with them the 8 and 9 year olds who can most persuade legislators to give money for research. If this idea of separation were realized both types will losevvv
So lets think this through. As a type I have benefited by the widespread issues of diabetes in the US. In fact without it being a major health issue i might still be doing injections or using u70 insulin. Without the children Type 2's might still be trying to get noticed in front of congress.
We share so much including the associated diseases that occur when diabetes harms us. I will never, ever, sell my brothers and sisters who are t2 out. I will never suggest that the labels type 1 and type 2 should be changed. It is a ridiculous notion that it should be changed.
So I get tired sometimes when people make the dumb mistake? Yes I do. But so did my Grandparents when their 7 year old daughter was diagnosed with Juvenile diabetes and they were summoned to school and told she ate a lot of candy and listened while school people warned them for their other children. My mom was upset when she heard about how her deceased sister at age 10 would still be alive if she had not had so much gum.
Here is the thing we are better together. Most disease groups that i am aware of are labeled disease by type number, I use bipolar as an example. Bi Polar is labeled bi polar 1, bi polar 2, bi polar 3 and bi polar 3. Is bi polar disease different than diabetes? Of course not.
So i ask that you put away this childless and focus on the real issue. Instead of clamoring for a name change, why not put effort into solving diabetic kidney failure, or neuropathy or Retinopathy? After you do that in a meaningful way then I will no longer think of this as a bunch of hot air. When a diabetic loses a kidney I do not ask are you type 1 or 2? Because in the end it dose not matter what type they are.
Finally in there is any confusion I stand with you my type 2 brothers and sisters, and I will oppose any name change in whatever forum I can find. There is no place for a naming controversy.
i say put the effort in in finding a cure so we don't have to deal with kidney failure, neuropathy, etc...and a cure for type 1 and type 2 are different. is bi polar disease different than diabetes, ah..yeah. type 1 and type 2 aren't different degrees of each other (one being better or worse then the other, of course) they're two totally different conditions/syndromes/disease. and i would imagine those bi polar labels (the distinctions between those numbers) involve different treatments and medications, that's why they are numbered, and those numbers don't involve an entirely different immune autoimmune disease vs. something else, they are levels of the same mental disability or condition with varies degrees. Most people who express viewpoints on these forum, any forum, 'think it through', and express opinions with passion, or we wouldn't comment.
Bi polar is not different, 2 of the 4 have very different causes. While 2 have similar causes. The cure of Kidney disease and or the others is rooted int eh management of the disease. Not the origin. There are not two cures for Retinopathy one for type 1'a and the other for type 2's. There is only a cure or a treatment for the condition. This babbling about types is a distraction and may reduce funding for both. If you are a type 1 and you seek better treatment you should not under any circumstances seek a change of name. Because if a name change occurs, the money will follow type 2's there are many more and we need them to support our research, like they need us to support theirs. We are codependent, separation would lead to marginalization of type 1's.
And so as to not prolong the misery this will be my last comment on this thread. I have made my position clear and any need to sea saw back and forth with multiple posts is destructive. Folks who do it simply wish to prolong an unwinable argument. Diabetics did not make the medical naming convention and we will certainly not change it
and if we're marching to congress for a 'diabetes' (generic) cure, that does nothing for either. the cure, supposedly for a type 1 is to somehow regenerate beta cells and/or try to eliminate the autoimmune destruction...a type 2 typically does not have total beta cell destruction or present with an autoimmune disease so that cure for a type 1 does nothing for a type 2. so, collectively as a group, this solves nothing. that's why there is a JDRF and specific organizations to support cures for both but individually not collectively as a 'group'. If it didn't matter what type we are then these organizations wouldn't exist; the different research/funding for the cure (either type) also wouldn't exist.
this has nothing to do with selling out anyone.
i didn't say the management for complications was different, that's not what i said. i said the CURE for type 1 and type 2 is different. you made your point that you don't support this, that's your opinion. i do as do many others. why even comment if you don't support this. i don't believe we are co-dependent, again that's your opinion. type 1 is ALREADY MARGINALIZED, again the point of ALL this because MOST people don't know about TYPE 1! you continue to comment back at every turn, again...trying to win an unwinable argument as well. OK, enough now.
and, as far as I know..there is no 'cause' per say for bi polar, that's also been changed; manic depression, anxiety disorder, all different levels and names now too.
and, Mary Tyler Moore isn't marching to congress for a generic 'diabetes' cure, it's a cure for type 1 diabetes, what she has, the foundation she supports and Chairs. Sure, I'm sure, like most of us, she'd like to see a cure for both but HER focus is type 1, we're not a collective group, it can't be that way in terms of awareness, funding, research..these are facts.
This article is the best summary I've run across about T2, Pathology and treatment of T2. The article points out that T2 is, in fact, genetic. I am certain that T1 is as well, although I don't have an article. It's not clear that what may work for one may not inform our scientific knowledge about the general workings of the endocrine process in such a manner as to benefit everyone who finds their self stuck with either of these crappy diseases.
That being said, I think that the largest and most "curable" problem faced by people with diabetes is the lack of useful targets and failure of the current health care complex to provide adequate testing supplies to test and manage diabetes, whether T1 or T2. My insurance company and many others I've seen people mention in their comments send me a yearly reminder that they only "owe" me 4x test strips/ day with a T1 dx because that's what Medicare covers. Then we do the song and dance and they give up what the doctor has prescribed for me. This year we had an additional kerfluffle about the brand, since they'd prefer I switch to a new brand, despite my record of success with the current brand. Given our propensity to drive cars, 4x/ day is a public health menace that makes no sense. By adjusting the standards (medically. This should come from the AMA, not Medicare, the ADA or TuDiabetes or any other level, as the AMA sets standards that are then used to determine the standards of medical care covered by insurers. Once testing (and insulin, of course...) is provided, it will be more possible to assess the actual cost of managing diabetes adequately. This is using currently available technology and should not be ignored in favor of "curism." I will certainly lobby to be covered for "a cure" when one is readily available however that seems to be a bit of a pipe dream at this point.
In terms of the name and public awareness, diabetes is marketable and widely understood and has historical value. The history of diabetes is very important as an explanation of why the disease is growing rapidly. Less than 100 years ago, diabetes was a ghastly death sentence so it shouldn't surprise anyone that a few generations later, our survival has "caused" the growth of the disease. I think that if we ditch the name to come up with a more accurate description we will lose what little societal recognition we have. Unless the name is extremely catchy. As PT Barnum put it, there's no such thing as bad publicity...
they can speculate type 2 is genetic...also with type. for me, not one person in my family, on either side ever has had any type of diabetes, type one or two but there is autoimmune diseases in my family. you're again using a 'generic, throw it all in the same pot' diabetes in your second paragraph. Thus, to clarify, type 1 diabetes in NOT widely understood, nor, do I believe type 2 is (thus the stereotypes). Type 1 is not growing rapidly and still concerned rare, people are living longer with type 1...because yes, it used to be a death sentence and we can now test antibodies, cpeptide etc...to diagnosis true type 1. type two is epedemic levels because of the reasons we know of.
Some people are really ignorant of the different types of diabetes and how they got there.I was overweight as a child but most of it dropped off as I became a teen. My heart goes out to you as I know kids can be cruel.
It doesn't seem they are "speculating" about T2 being genetic, since they identify a number of specific genes responsible for various aspects of the condition, or maybe more accurately, the conditions leading to T2 in the article.
RE the increase in the rate of T1, I found an article in the Wall Street Journal and another one in Scientfic American that suggest that the rate of T1 is, in fact increasing.
I agree that the specifics of T1 and T2 are not widely known and that misconceptions are pretty common to encounter. Doctors themselves are often very clueless about the tactical and strategic management of diabetes but diabetes can be managed fairly well with the tools in our current arsenal if they are provided and supported adequately.
I would wonder too if these diseases are genetic, if we might be seeing an increase in the rate of mutation due to plastics, cell phones, atmospheric nuclear testing in the 1960s and other factors beyond just saying that T2 " type two is epedemic levels because of the reasons we know of" because, at least as the T2 article I posted points out, T2 is more involved than we have understood until very recently.
Or maybe were seeing the increase in a genetic disease because people now survive long enough to have children who then are survive long enough to have children...
That's not a rant but a shared story. Im so sorry. That teacher or unguided curriculum which allowed that movie to be viewed in disregard to a student's diagnosis was a world beyond sensitive & informed. To actually play that movie with a diabetic child present was not a thought out plan. There was no reason why you needed to watch that movie even once under scrutiny of peers, who werent given an education to understand the two types of diabetes. If they had to show that movie, the health teacher really could have explained Type1 or the school RN. Also, all parents had to sign off on that movie b/c it's PG 13. So it wasnt just the health teacher and school's decision. I'm glad you can talk about it b/c that's the real gain from this. Externalize it & get rid of it. There's countless diseases & conditions that are categorized in a group like say muscular dystrophy; people essentially become more familiar with particulars as their interest or experience draws them in. As a Type1 mother its frustrating that the media is always geared to Type2, unless they're selling insulin:) The truth is I know that Type2's are a Type1's best friend because they know Type1 better than the general population and Type2's are 26 million and multiplying. It's good to have friends and comrades-in-arm. I pray for all of diabetes to be cured; dont 4get gestational,insipidous, monogenetic... Thanks for sharing
Simple minded me : for almost 30 years I have been advocating for PWD incl ME ..when I was diagnosed in 1983 it was called diabetes and I required insulin ( I still do ) By the way the Canadian Diabetes ■■■'n has a monthly mag called Diabetes Dialogue ; Winter 2013 has an article pages 22- 27 called Type 2 diabetes:Choice or Chance ...interesting reading .The writer 's comment , quote : The causes of type 2 diabetes are complex ...So why do so many people ( I am including Media !!) treat it like a " lifestyle " choice " . I have asked the CDA via FB to provide a link ; they promised they would !
Thank you Nel...hugs.
To the OP, I'm terribly sorry you had to experience that level of discomfort and anxiety. Being a teenager is difficult enough.
This incident really brings to light the ups and downs of "people need to be informed". As a teacher, that's my job and I know, despite my best efforts, any attempt to disseminate information runs the risk of coming off as insensitive.
Just the cursory discussions about HIV and Bipolar Disorder in this thread, and anything else that we think we know about but really know little about, demonstrates how each of us can be guilty of being insensitive unintentionally. I wonder how many Phenylketonurics I'm marginalizing every time I drink Diet Coke. I wonder how much of my own frustrations towards people who don't know about my condition have come from a place in my own heart that just wants people to know what I know so that they can feel what I feel.
So, 30 years of living with diabetes has taught me three things: A lot about how to live with Type 1 diabetes, a certain level of cynicism regarding educating those that don't have to live with Type 1 diabetes, and clear understanding that I really have envied those people who don't have to know what I know or feel what I feel when it comes to Type 1 diabetes.