Change the name of Type 1 Diabetes

By ssumm Latest Reply 2016-01-31 13:56:23 -0600
Started 2011-11-14 10:48:04 -0600

Help affect social change by removing the name "Diabetes" from Type 1, in an effort to distance ourselves from the unfortunate stereotypes associated with Type 2 Diabetes. Sign this petition:

Thank you!

111 replies

flo77 2013-03-23 12:33:59 -0500 Report

I realize I'm joining the discussion at a late date, but as a Type 1 diabetic I wanted to add some things. I do not want to put down or blame Type 2s, but there's some things that Type 2s just can't understand about Type 1. The reality is that most type 2s were diagnosed as adults and simply can't understand what it's like to be diagnosed as a child. Most Type 2s had childhoods free of injections, blood testing, restricted diet, insulin reactions, etc. I have a friend who has Attention Deficit Disorder since childhood. I would NEVER say to him "I understand what you went through as a child." Of course I don't understand it- I've never experienced it! Likewise, Type 2 diabetics should never say to me "I understand what you went through as a child." Yet they do say this. Another important point is that most of the Type 2s I know don't even know the difference between Type 1 and Type 2 — they don't care and they think it doesn't matter. It does matter. Someone made a snarky comment about Type 1's wanting more funding. The reality is that Type 2 diabetes receives 80 percent of the diabetes research funding. Type 1 receives 20 percent. This is because the pharmaceutical companies make more money developing drugs for Type 2s. This situation should not be blamed on Type 2s, but please note that it's very frustrating to see the slow pace of advances in Type 1 treatment. The last significant advance in Type 1 treatment was the insulin pump. This was invented 35 years ago! Only a small number of type 1s have received pancreatic cell transplants and the results have been mixed. Also, although both type 1s and Type 2s are prone to complications, please consider that fact that the longer you have diabetes, the more likely you are to develop complications. I am 42 and developed Type 1 diabetes when I was 5. Thus I have had diabetes for 88% of my life. Now suppose that a 41 year-old develops Type 2 diabetes. When he's my age - 42 - he'll have suffered from diabetes for less than 5 percent of his life. Compare it - 88 percent vs. 5 percent. Can you see why a Type 1 may be frustrated?

fancyfree 2016-01-31 13:56:23 -0600 Report

SOME T2's may say stupid things but it is wrong to put all of us under the same blanket. You are doing what you are blaming T2's of doing. Possibly you should be educating those T2s instead of blaming them.

beachlvr 2012-03-10 17:49:02 -0600 Report

What a useless idea. Grow up

Anonymous 2012-03-10 18:01:17 -0600 Report

This is an old discussion which pretty much died two days after it was started last November. Since you see no value in it, per your words, why bring it back out to start the battle over again?

beachlvr 2012-03-10 19:06:11 -0600 Report

Sorry I never noticed the date I am new here I will be more alert from now on.

GabbyPA 2012-03-11 10:10:36 -0500 Report

No need to be sorry. You found a discussion you were interested in, it is here and if you want to reply then that is the whole point of the site. Welcome and I hope you enjoy and find some more useful things here.

MrsCDogg 2011-11-22 13:38:34 -0600 Report

In the words of God in the movie Bruce Almighty…You want to see change, then be the change! There are some who like to look down their noses at us type 2's. I don't really see any difference in us. We both have a life altering and life threatening disease and it sucks for both of us.
But, as long as there are small minded people in this world who like to put labels on folks there will be some who feel the need to fight! Some times the only way change comes is through conflict.

dietcherry 2011-11-20 22:29:39 -0600 Report

Man I have hesitated in joining this Discussion in fear of offending any of you, T1 and T2.
Im saddened by how profoundly this issue has divided us and my hope would be to see this passion redirected into something productive; as it is, its wasted energy on the wrong cause.
We all know that the false general perception of T2 is that its brought on by being overweight and underactive. T1 is perceived as being the "bad" diabetes and was brought on by eating too much sugar as a child.
Outdated stereotypes and yet they stubbornly endure. Shouldnt we be examining why this is and how to eradicate them from the public consciousness?
This issue should be addressed and possibly then a name change would be unnecessary.
Im neither for nor against this petition; if it makes a positive contribution towards enllightening others about D, then I will sign it.

woodenwings 2011-11-19 09:12:06 -0600 Report

Type 1, type 2, what you gonna do. It's just another 'label', we're all trying to be stable. The bigger the club, you don't have to be a 'chub'. You pick a name, Dude this ain't no game. I'm a type 1 Rapper, don't call me a Flapper. You want social change, Man that's strange!

nzingha 2011-11-18 23:17:40 -0600 Report

also want to know when you become dependent on insulin, do you then become a type 1 diabetic?

JBrindley72 2011-11-19 10:02:43 -0600 Report

I was told type 2 diabetics can also be in the type 1 group. There is also a name some people are using for this - type 3. I know it really doesn't exist in the medical world, but it is a unconfirmed name for people with type 2 being dependent on injections as well.

jayabee52 2011-11-20 08:14:32 -0600 Report

I go to a diabetes support group here in Las Vegas, andChris and Teresa' the facilitators of the group refer to someone who cares for a person with diabetes (PWD) as a "Type 3." as the diabetes which afflicts the PWD does affect the ones who love and care for them. Again it is not a medical term per se, even though the Chris and Teresa are both nurses.

Caroltoo 2011-11-18 23:22:08 -0600 Report

If you are Tye 2, you probably use insulin because you are insulin resistent. Our bodies have insulin, but aren't able to use it well. Type 1s have had an autoimmune reaction and can no longer make insulin.

annesmith 2011-11-21 23:58:00 -0600 Report

I was wondering if you could answer a question for me: there is a nice guy on here who has written in on his diagnosed LADA—that's autoimmune, and I was told that any insulin production between 0% and 10% is type 1, anything above 10% is type 2…I knew a lady that had diagnosed type 1 at age 3, and she said that on a good day she produced 3% insulin on her own…so, are all of these type 1 diabetes? I was told by a very excellent physician they all are type 1. I feel sorry for the LADA guy, as, how is he supposed to feel on the petition thing? ANNE

annesmith 2011-11-22 22:44:19 -0600 Report

I was speaking of RusselStamets, but it would be nice to meet KDroberts, too. I honestly think there are many variations to diabetes…more than what they have currently found. To me it's like a spectrum of colors…it's all under one color to me—black, but, there are many colors extending from it. ANNE

jayabee52 2011-11-23 09:31:30 -0600 Report

I think I remember seeing you posting in one or two of his discussions. He seems not to be putting up discussions here in the last month or two.

SongDude 2011-11-22 11:58:43 -0600 Report

I'm Type 1; someone else could be Type 2; another person could be gestational. We have enough infighting within our own Federal government… so, let Jayabee crack the funnies, and everyone else just be respectful. The SongDude's Etude in Sociology Minor… ;)

Teresa Rose
Teresa Rose 2011-11-20 01:24:44 -0600 Report

That's exactly how my physician explained my diabetes type 2. He said my body has insulin but couldn't use it. He said my cells were like a door and my insulin was a key that didn't fit the door. It didn't make sense at first until I learned about my diabetes.

Uncle Lew
Uncle Lew 2011-11-17 09:11:07 -0600 Report

Changing the name will have no affect. Diabetes by any other name is still diabets. People will be the same ignornant, biased jackasses about the conmdition no matter what you call it. The was is to educate these stupid, moronic idiots.

MoeGig 2011-11-16 21:05:12 -0600 Report

Interesting perspective, but I guess I consider diabetes on a continuum…maybe like cancer, e.g. Stage 1,2,3 or 4. I know many Type 2 diabetics who are in shape and take some insulin to supplement the insulin produced by their pancreas. (My 96 year old father). Maybe Stage 4 Diabetics would be the classic obese individual who's in more immediate danger. I think no matter what Stage diabetes we have, we're all in this together—a name change for Type 1's won't make any difference in allocating additional research dollars from NIH. If you're a Stage (type) 1 diabetic that doesn't take of him/herself, you develop the same complications a Stage (type) 2, 3 or 4 will…IMHO.

kdroberts 2011-11-16 20:00:31 -0600 Report

What about gestational diabetes? Or what about MODY and LADA? How about transient and permanent neonatal diabetes? How should they be renamed because they all have the same kind of problem you describe. Or is it just type 1 you want renamed because that's what you have? Wouldn't it make more sense to educate rather than change a name since a name change obviously didn't help you when it went from juvenile diabetes to type 1 diabetes? Did you really think this through? I think not and the 35 signatures seem to suggest that as well.

annesmith 2011-11-16 22:33:10 -0600 Report

I pretty much agree…my suggestion to the person that wanted a complete name change would be to stay the heck away from the ignorant people that are telling him he got diabetes by being fat as a kid. If someone surprises you with a bad comment, get away from them fast…I have learned this over the last couple of years…I had years of undiagnosed childhood diabetes…as far as changing the name, like I said yesterday, my opinion is NO…and it can't be changed back to juvenile type 1 diabetes only, as, research has more than proved now that type 1 can occur at any age—-of course, it usually occurs by age 29, but, I have already met more people online here that became type 1 ate age 37, 48, and so on. Stay away from people that are cruel, and surround oneself with positive people——-THE MEDIA? YES, I see smm's point on that, however, the media is covering mostly type 2 diabetes, BECAUSE, the majority of people in the U.S. are type 2—-the media could use improvement on their generics…this I agree with, but renaming it isn't the answer—-they need to be more SPECIFIC about the difference between type 1 and type 2…seriously, both types are diabetic, as they result in high blood sugars. A type 1 will die without the insulin…no doubt here…but a type 2 will die if the blood sugars go too low, and too high. There is only so much insulin hospitals can give to a patient, and if it gets too high, the body reaches a point of no return—-it's just that in a type 1 it would happen a lot sooner. So, we have dementia vs alzheimers he said—-I guess I can agree with that pretty much. I can guarantee most people already know the difference between the 2 types——but, the ones that are ignorant seem to be VERY ignorant…don't rename it…just re adjust who you are around, or tell THEM to get the heck away from you…you'll save yourself ( this part is to ssmm) a LOT of grief…sincerely, ANNE

Mickey/CCHT 2011-11-16 19:53:33 -0600 Report

I'm with pixsidust, 2 Thumbs down! I can see were sterotyping and social ignorance is still alive. How very sad.

flipmom 2011-11-16 15:36:48 -0600 Report

diabetes by any other name is still a diabetes…

flipmom 2011-11-16 15:41:36 -0600 Report

im amazed that stereotyping exist even in deseases…it would be much more usefu lif u put your effort on the cure instead of paying attention to (bullying) sterotyping because no matter whatt you do theres always people who will be idiots..

Type1Lou 2011-11-16 12:19:56 -0600 Report

I spent the evening pondering your discussion and my earlier reply. How much more useful it would be if you were to expend your energy and passion in attacking the source of the problem which is misinformation and ignorance rather than just changing a label…which won't change a thing! I have tried to educate the people I encounter about diabetes when they express an interest.
We can be the best role models by taking responsibility for our condition and acting appropriately.

Jim Edwards
Jim Edwards 2011-11-16 12:09:58 -0600 Report

I do not see the point or what you hope to accomplish. If all Type 1's feel the need to distance them selves from us inferior Type 2's then come up with a new name for your condition. The Type 1's that I have come to know on here, I suspect will stand by us with the Type 2 leprosy. Your purpose may be noble and just, but I think you need to bark up a different tree. just my opinion. Jim

annesmith 2011-11-16 22:41:10 -0600 Report

I agree with Jim …the petition seems to leave out those that have more than one kind of diabetes—-I could be wrong here…so , all apologies to ssmm if I am wrong. A petition is a strong statement of " HEY——let's ban something." It fires people up fast. SSmm reacted with emotion to the idiots out there…understandable, but he channeled it into a petition, which also left out the TONS of type 2 diabetics that never ever put down type 1 diabetics. The media needs change, but not to the point of a new name. Your purpose does sound very noble to me ( ssmm), but you have changed things over to the ALL or inferior status. This sets up a stage of " we against them", which makes the situation you described even worse…ANNE

Jim Edwards
Jim Edwards 2011-11-17 08:47:07 -0600 Report

Prior to this post, I had no idea that it was us (Type 2) against them. I guess I will have to load up my automatic paint ball gun and start marking the enemy!
(No, I won't come after you Type1Lou. You are exempt!) Jim

annesmith 2011-11-17 23:05:44 -0600 Report

I had very little idea prior to the post, too. I guess you will have to load up your automatic paint ball gun then…ha, ha,ha. Some people, but not the majority of people, are very hostile about it. Diabetes is diabetes in my opinion, and it's not cancer, it's not MD or MS, it's not the end of the world no matter what type of diabetes one gets. Sincerely, ANNE

jayabee52 2011-11-17 23:09:30 -0600 Report

I was aware that there have been open warfare between T1s & T2s on other boards. Sometimes there is even a hint of that here, but fortunately it hasn't broken out into a full scale flame war.

annesmith 2011-11-19 23:04:13 -0600 Report

Yes…thank God it hasn't broken out into a full scale war…that would not be good. I have rarely had a type 1 or type 2 diabetic argue with me, or insist they are worse off, etc…in fact, the more I think about it I don't ever recall that happening. ANNE

annesmith 2011-11-19 23:04:14 -0600 Report

Yes…thank God it hasn't broken out into a full scale war…that would not be good. I have rarely had a type 1 or type 2 diabetic argue with me, or insist they are worse off, etc…in fact, the more I think about it I don't ever recall that happening. ANNE

roshy 2011-11-18 10:20:24 -0600 Report

what a statement!!! ' a warefare between type one and type twos' !! i strongly agree and have identified with it a number of times in the past. There is no denying that two conditions are different on many levels. but changing the name of type one will achieve nothing in the long run i believe. We need to inform society the major differneces between the two. We need to be more specific in the media of which type of diabetes we are talking about. When i am confronted about my diabetes i have been asked do i have the good kind or the bad kind?? this is the type of misinformation and disalusions which needs to be takkled.
I have to admit i always distinguish that i am type one insulin dependant to others. I have experienced the majority of my life without diabetes and only one third with it and sometimes i feel like others do not aknowledge how difficult the condition can be. With type one you constantly testing your sugars, insulin injections, frequant hospital appointments, reajusting a lifestyle to your glucose monitoring diary can be hard work at the best of times. Then theres the care of your insulin whether your a shooter or a pumper so there is alot more involved in type one then i understand involved in type two ( i have often wondered what it would be like to be a type two instead!!). So to an extent i can understand the unwanted stigma which is attached however it all comes down to understanding and good education. AT the end of the day we are all aprt of the same team i guess. We all want to try our best in living with it the best way we can!!

Interesting post, thanks for posting!!

beachlvr 2012-03-10 17:45:27 -0600 Report

Do your research some if us type 2 have the multiple bs testing everyday, take injections, use pumps ,suffer lows & highs,. It is not limited to only type 1.

GabbyPA 2011-11-18 09:09:07 -0600 Report

Then I say we raise the flag of peace on this. We are all trying to achieve the same goal here. A healthy life with diabetes. We may have to do it a little differently, but the goal is the same.

Type1Lou 2011-11-17 09:09:04 -0600 Report

Thanks Jim! We really aren't in two different camps…it just seems that way to woefully misguided ssumm.

annesmith 2011-11-19 23:12:16 -0600 Report

Yes…it's all one camp to me. Of course, there are different sections to the camp, but the whole camp is the same. I wonder how LADA people feel about this topic? I am thinking that when a person like the last one writes in for a petition to change the name, it might be even harder on people with LADA, because they are " late bloomers". I have met a few people over the years that do nothing but compete for different illnesses…if a person sneezes, they sneeze twice, if a person coughs, they literally cough twice…it's actually quite humorous after awhile. I used to know a guy that every time he found out somebody was diabetic, he'd get mad. I would ask him what was wrong, and he'd go on and on and on about that person supposedly faking it…I finally ditched him permanently because everywhere we'd go, if someone happened to bring up diabetes, particularly type 1, he'd throw a big fit…He was 60 years old, so, I decided this was way childish on his part…he kept saying he'd change, did not, so, I ditched him. ANNE

Jim Edwards
Jim Edwards 2011-11-17 09:36:30 -0600 Report

I know. Like I said, I had no idea of this until he/she brought it up. Okay, I will unload my paint ball gun. Rats!

Caroltoo 2011-11-17 09:45:38 -0600 Report

And a huge sigh of relief ripples across the entire d.c. community. What you we do if two of our most favorite contributors were in a paintball war? :)

Jim Edwards
Jim Edwards 2011-11-17 09:49:55 -0600 Report

I was about to issue the order to gather up all Type 1's and bring them to camp here in Gore. They would each be issued a brown cassock and some antlers and allowed to run through the woods. i understand now that there is no cause for alarm, but beware Type 1's one of your own has betrayed you and has planted the seed! I know, jim has had too much caffeine!

Type1Lou 2011-11-17 14:01:43 -0600 Report

"Deer" Jim, I glad to see that you'll not "paint" all of us Type 1's the same color! I love your sense of humor which helps to defuse some of these volatile discussions! Laugh on!…and hugs!

annesmith 2011-11-17 23:08:03 -0600 Report

Yeah…I agree with you. It's such a relief to read some humor, too..ha, ha. Diabetes is diabetes…ANNE

Jim Edwards
Jim Edwards 2011-11-17 14:17:58 -0600 Report

The sad part is now I have to run all of the brown monk robes back to the monastery in Berryville, VA! That is where my 92 year old uncle resides. Want to see a neat monastery? Look for Holy Cross Abbey in Berryville, VA it is a Trappist monastery.

GabbyPA 2011-11-16 09:09:53 -0600 Report

Now, if this was a petition to eliminate the stereo types in general, that might of interest. I think education about diabetes will provide a better outcome than a petition to say type 1 is not stereotypical. We are twins, though not identical, we share many of the same issues.

Getenitright 2011-11-15 21:53:54 -0600 Report

I can't believe that there are individuals out there who feel that a distinction has to be made between type 1 and type 2 diabetics. The medical community understands the difference and our families and friends understand the difference as well. That's who should matter most to us. Are type 1's looking for more sympathy and understanding? Prior to being diagnosed as a Type 2, whenever I saw someone testing their bg, my first thought was always — diabetes. Not if they were type 1 or 2. I always thought they were taking care of themselves and being responsible. Did you know that there are many different forms of breast cancer? All we ever hear is breast cancer, not its different names and they all stick together. And that's only one example.

We all face challenges daily from diabetes…some of us more than others. The medical complications that arise from this disease are the same for 1's and 2's if you don't take care of yourself. All of us test our blood glucose and most of us take some type of medication and/or insulin. Do you think type 2's have it any easier? Exactly how separate do you want to be? Do you want more funding for type 1's than type 2's? How about starting your own social network? Whatever happened to unity and solidarity?

If someone has a genuine interest in you, then they will get to learn and understand the difference. Other than that my diabetes type is my own business.

Type1Lou 2011-11-15 17:14:05 -0600 Report

A rose by any other name would smell as sweet…even though Shakespeare wasn't specifically talking about diabetes, the sentiment applies. As a Type 1, I find your post and petition elitist, arrogant, divisive, and unsympathetic. I will NOT be signing it!

annesmith 2011-11-15 22:55:08 -0600 Report

I have decided not to sign it also. I can understand why there should be a brand new terminology if type 2 NEVER is associated with low insulin levels. I know some type 2s who have severe severe severe low insulin levels, and this would leave them out basically. I do know people over the years who treat type 1 diabetics terrible, and I have always been the first to defend type 1s and type 2s both. The person who wrote in for the petition obviously had bad bad bad treatment by type 2 diabetics, and he or she is tired of the generic media—-I understand that, but he or she took it too far. BOTH types did not get it on purpose…like I said , in my family, every single person on one side of my family except for 2 are type 2 diabetic—-there's no way they all got it on purpose—-in fact, one is skinny as a rail——3 others were normal —slightly overweight. ANNE

arsmithsr 2011-11-15 16:56:53 -0600 Report

So how about me? I am 42 years old I am a veteran of the US Navy never been over weight I am about 5'7" 164 pounds and thin as a rail and always have been. I just got diagnosed about 5 or 6 months ago. And no I don't have a sweet tooth and never really have. However I am type 2 one of the issues is there is no test for insulin levels. There is no real way to diagnose other than to see if blood sugar is going up. Maybe there is a test for type but there is no test to see if you are insulin resistant or just not making enough. I have also gotten the strange looks when people find out I am Diabetic because I am not fat. And it does run in my family. SO just genetics. But I think the real culprit here is the media. Because of all the science by press release going on these days. You know like a few months ago when Drs. In England said all Diabeties could be cured by a 600 calorie a day diet for 4 months? Total non sense but People believe it. There were only 11 people in the study and only 7 showed and results for more than a couple of months. I am also frustrated over the way the press depicts us but do you honestly think that I caused my own disease? That is the point because you continue the same BS from the press all type 2's caused their own problem's. BS!!

kaiya2465 2011-11-15 15:19:55 -0600 Report

Sorry DC I need to get this out…What are you a total idiot? My weight is 110 you call that overweight? I eat healthy, exercise daily & don't sit on my rumpus…So you need to learn more before you speak or SHUT UP until you have 100% proven facts to back everything up, not just semi facts. Yes they are different in some ways but we all can suffer the same consequences either way if out of control.

Thank you DC for being there for me. If this is inappropriate please let me know by email.

annesmith 2011-11-16 22:57:43 -0600 Report

Yes…this is Anne…nice to hear from you again Kaiya!!!!!! I feel the man that wrote for the petition wrote it in emotion, but the fact that he spent all the time to get a petition tells me now that he's focused only on the idiots that treated him bad…I understood why he was mad at THEM, but I strongly feel he needs to see the whole picture better. To me, type 2 is comparacent to having a lot of bad sores, and type 1 is one huge sore…no offense meant here to either type—-it's like this: several sores are serious, and one huge sore, where one has to have insulin to live , is very serious. But, a person can bleed to death from several sores, and the one person who is a gigantic sore can die too, but, YEAH, this is a bad analogy here—-my point is—-they are both serious. I know some VERY healthy robust type 1s, and type 1s that are skinny and weak…as well as type 2s…renaming this is not necessary. I will agree they are not EXACTLY the same—definitely not. I will never agree under the sun though that they are two entirely different diseases. Type 2 is not PURE insulin turn-away…it's genetic, limited insulin PRODUCTION—-which is serious—-if someone is only producing HALF of the insulin their body needs, this is serious, even though the label is type 2. If a type 2 goes to LOW, they can very well die…and also if they go too high…only thing I can think of that would help ssmm is if the media specifically said " TYPE 1 COMPLETE insulin dependence" —-if that does not get the message to the idiots out there that are guilty of putting down type 1s, then nothing will—-most people are good and don't glare at type 1 diabetics——-ANNE