Diabetes' civil war People with Type 1 diabetes, outnumbered and overshadowed by Type 2, fight for recognition, resources — and a new name for their disorder

I don’t get the millitancy about the us/them thing. Both camps have come out with some pretty bonehead statements about the other. Lifestyle isn’t THE cause of T2, but it can contribute to those who are genetically predisposed and develop the disease. Obesity is a huge (no pun intended) problem in this country. Yes, I know that there are many T2s who are not overweight. I’m not trying to generalize but we do have to recognize that the sedentary lifestyle along with poor eating and nutritional habits have brought us to where we are. Assigning blame isn’t going to help anyone. Comparing my regimen to a T2s regimen in some cases is nearly identical, in other cases, not so much. My sister is T2 and is on oral meds and seems to be doing pretty well. If she lost some weight, her control would be better. But, by comparison, she doesn’t carb count and I’m pretty sure that her eating habits haven’t improved greatly since I left Tucson. Put us side-to-side and taking care of myself is much more complicated with greater dangers inherent in my condition as compared to hers. That’s not her fault. It’s not my fault. I have an aggressive immune system and a broken pancreas and I spend most of my day trying to duplicate the action of my pancreas. The changes in my BG can happen very rapidly and very unexpectedly. I have a few more things to lug around than my sister does. I have a pump and a CGMS, she doesn’t.

In some ways the conditions are very different but they both do the same kind of damage. What we can all walk away from this article with is the plain fact that we aren’t generally understood by the public (and by many medical personnel) and it kinda sucks to be us (both T1s and T2s). I’m not a big fan of segregation of the types – we can learn a lot from each other. Once it comes to your house, it’s very unlikely that it will ever move out. The on-line community is supposed to be there for everyone because we all need support and we all have questions from time to time. John Q. Public doesn’t really care, usually won’t take the time or give any attention an explanation of the differences, and probably had a grandfather or uncle or someone who lost a limb. My grandfather was a T2 (skinny). He ended up with gangrene because he clipped his own toe nails. THAT is the part of the story that sticks, not the origin of his condition. We all have to do things and consider things that other people just simply do not.

I really don’t think that a spirited round of “mine is harder than yours” is helpful to anyone. We can accomplish more for each other by working together.

I thought the article, on the whole, was pretty even-handed. I question the premise.

America seems to love civil war now that the horrors of the big one are totally forgotten. I wonder if the Doctor from the Albert Einstein hospital has considered the possibility that diabetes cause tummy grease in some cases not the other way around. Just because 2 things are correlated does not prove causality it is like the chicken and the egg and why do most obese people not develop diabetes. In studies of identical twins if one develops type 2 then there is an a priori probability of 4/5 that the other one will also and this is higher that for type 1 in identical twins…

This whole topic of discussion is hatemongering. I refuse to take part in this. I found the discussion over at diabetesdaily offensive. I come here to be with other people who share something in common with me.

Good question, Jenn. I’m an Instructor and should be well able to quote sources at the drop of a hat, but I’m just not wired that way, and have to write stats and sources down when I need them. The only source I can come up withoff the top of my head is I just looked in my copy of Using Insulin by John Walsh where he states that " about 15-20% of people diagnosed with Type 2 actually have LADA (also known as 1.5). I have heard these figures quoted in several places, mainly when I was doing research on LADA for my own diagnosis. Hopefully Melitta or someone else will jump in with more sources. (I haven’t read all the way through this thread, so maybe they already have).

I looked at it and it wasn’t so bad – there were the few who buy into the myth that fat people get that way because they’re sedentary and eat crap, and that causes Type 2. But there were also a lot of people who mentioned the fact that MOST fat people DON’T get diabetes because they don’t have the genes for it, and that there are certainly many thin or at most slightly overweight Type 2’s.
I have a dear friend with Type 2 who is a CDE and she is obese. She eats well (much better than me), and she exercises (much more than me) so why is she fat and I’m not? Because we got different genes and my diabetes is not the same as hers. Maybe the classic Type 2 genes cause the obesity (in the presence of abundant food – no one is fat in a concentration camp!!) and not the other way around.
I blame the Media for continually repeating the myths about diabetes and playing the blame game on Type 2’s. Type 1 gets ignored, except for children, but maybe that’s better than the horrible stigma of Type 2.

Thanks Zoe :slight_smile: I’ll keep my eye out for some more resources too!

Hi Jen: Take a look at some of the blogs I have written, where I include the stats and references you are asking about (how many people use footnotes in blogs?!). Below is a somewhat long answer to your question, my apologies for the length:

It has been documented for at least 70 years that new-onset Type 1 diabetes is more commonly seen in adults, not children. In 1934 Dr. Elliot Joslin noted that the incidence of diabetes in lean individuals was relatively constant in each decade of life, but that diabetes in the obese was related to older age. A book published in 1958 (“How to Live With Diabetes” by Henry Dolger, M.D. and Bernard Seeman) that states that “[Type 1] diabetes is almost three times more frequent among young adults than among youngsters.” Today, with antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies), the same statement is proven true. A new book, “Type 1 Diabetes in Adults: Principles and Practice” (Informa Healthcare, 2008) says that adult-onset autoimmune diabetes is two to three times more common than classic childhood onset autoimmune diabetes (p. 27).

PERCENT OF ALL DIABETICS WHO HAVE TYPE 1 DIABETES

In information distributed to laypeople, CDC and ADA consistently say that Type 2 diabetes represents 90-95% of cases of diabetes in America and that Type 1 diabetes represents 5-10% of all cases of diabetes. However, this is incorrect according to ADA’s own peer-reviewed scientific journals. That 90-95% Type 2 statistic includes people with latent autoimmune diabetes in adults (LADA), and according to the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus (as published in ADA journals), “Although the specific etiologies of [Type 2] diabetes are not known, autoimmune destruction of beta-cells does not occur.” The National Institutes of Health (NIH (NIDDK)) defines LADA as a condition in which Type 1 diabetes develops in adults. Furthermore, the Expert Committee’s definition of Type 1 diabetes by the clearly encompasses all autoimmune diabetes, regardless of age, which includes LADA (“Type 1 diabetes results from a cellular-mediated autoimmune destruction of the beta-cells of the pancreas. In Type 1 diabetes, the rate of beta-cell destruction is quite variable, being rapid in some individuals (mainly infants and children) and slow in others (mainly adults).”) According to Irl Hirsch M.D., member of the Expert Committee, “The term latent autoimmune diabetes of adults (LADA) as originally described represents perhaps as many as 10¬ to 20% of adult-onset patients with diabetes.” Doing the math, Type 1 diabetes represents about 20% of all people with diabetes.

NIH/NIDDK defines latent autoimmune diabetes in adults (LADA) as adult onset Type 1 diabetes. According to John Walsh, author of “Pumping Insulin”, rapid onset Type 1 is about 5-10% and adult onset Type 1 is 10-15% of the total diabetic population. Irl Hirsch, M.D., one of the Expert Committee on the Diagnosis and Classification of Diabetes, says that LADA is about 10-20% of the diabetic population. All studies that use antibody testing (the gold standard for diagnosing Type 1 autoimmune diabetes) indicate that about 10% of “Type 2” diabetics are antibody positive and have been misdiagnosed.

Reading through the replies, it seems that we are all preaching to the choir. It seems generally agreed that ignorance is very prevalent, misconceptions about the types of diabetes are rampant, and we all agree that we are stronger together than divided. I’m going to say “yay, team!” If they are expecting 1 in 3 Americans to develop some form of diabetes over the next several years, they had better start informing the public and making people generally aware. Already there are millions of folks out there who are diabetics and don’t know it.

The crowd here seems to be pretty enlightened about the issues. Why don’t the authors of these things ever swing by and check out what the buzz is in the community? I’ve never felt that I was in direct competition with T2s for anything. Maybe we should go totally acronym. DM1, DM2, DMG. I am good with LADA – it’s pretty catchy on its own.

What do I think about this article? It perpetuates myths, presents some really inaccurate information, and it focuses and showcases some really angry people (Angie Hashemi-Rad) who make angry, ignorant (“wuss diabetes,” come on) comments. There are actually valid reasons for having Type 1 and Type 2 diabetes have different names, because they are different diseases, but this article really doesn’t address those valid reasons. Shock value–using “civil war” in the headline–this is just sloppy journalism.

On a different note, my best wishes to ALL (in the U.S. or wherever if you are celebrating) for a wonderful Thanksgiving. I am busy adapting treasured family recipes to be low sugar, for tomorrow’s gathering.

The article was full of holes, but the general gist of it brought up a good point. A lot of research money is sent toward type two diabetes, whereas type one tends to get put on the back burner when it comes to working toward a cure. If something as simple as changing the name for type one would help more money get put down toward finding out how to fix the autoimmune disease then I’m all for it. I mean, heck, let’s just call it Bob.

Cure Bob! Run for a Cure for Bob! It’s Bob awareness month, so be sure to wear paisley!

We have seen this type of discussion before since I became a TuD member in 2008 ( 5 times, more or less ??) . To put it bluntly( not my usual way of responding , I might ad) I am getting " tired " of this and am clear , that it is a waste of energy , time etc, etc…to focus on news items of this type …carry on folks, if you like and I need to focus on my diabetes and am off on a walk in the snow !

This type of discussion will always be new to someone - not everyone here is a veteran of diabetes. New people seem to pop in every day! :slight_smile: I think these types of discussion pose no real harm and help in distributing facts and figures to both sides. We all walk away with a little more information on the other type. No need to bash the discussion. :slight_smile:

Do you follow the professional journals and read about the research? I don’t think Type 1 is put on the back burner at all. It may be true that the popular media focus more on Type 2 because a lot of people are at very high risk for it, but back in the universities and research institutes, there are many researchers working on autoimmunity in general, and Type 1 diabetes in particular.

You do have to understand that autoimmunity is a complex problem, and if there hasn’t yet been a cure, it’s because researchers haven’t yet been able to put all the jigsaw pieces together. There has definitely been a lot of progress made in the last decade, even if they have not yet found a cure.

Look at how many centuries and millennia it took for insulin to be discovered (diabetes was known to the ancient Greeks). It wasn’t going to happen until the scientific and medical knowledge was ready. A guy named Minkowski (I think) discovered the function of insulin around about 1859, but the actual purification of usable insulin did not happen until 1921. That doesn’t mean people weren’t trying, but that it had to wait until someone found the exact right way to do it. And it took 62 years!

So Type 1’s are now in the waiting period until someone finds the exact right way to cure autoimmune diabetes. No one can predict how long it will take, but never forget the people who are working very hard. right now to do it.

I actually agree that Type 1 and Type 2 are different diseases and, for the most part, different lived experiences. But that’s okay, there’s nothing wrong with them being different. What point is there in articles like this one that are filled with so much anger? In the end both types of diabetes suck even if they are different. There are better ways of educating the public about the differences than articles like this one that seem to come up again and again.

Uh, right. I’m aware of this. But the more research being done, the better, you know? I don’t think that there is as much research being done as type one as there is on type two simply because of the portion of the population that has type one is significantly smaller and it isn’t brought up in the media as often.

I agree, the more research, the better. And yes, when the dollars are finite, some valuable research projects go unfunded.

But I don’t think you can quantify research when it comes to Type 1 and Type 2. The reason is that a lot of general autoimmunity research has a relationship to Type 1, even though it’s not labeled diabetes research, whereas a lot of genetic (13 genes for Type 2 so far) and hormonal research (like leptin and ghrelin) may not be specifically aimed at Type 2 (but rather at obesity in general), but definitely has implications for Type 2. Who can count how many studies apply to what?

I actually believe a cure for Type 1 will come before a cure for Type 2. Scientists have a clearer picture of the genetics and they can and do identify children who are at high risk because of family relationships and antibodies. There have been trials of ideas for preventing Type 1, and although so far none of them have worked as predicted, at least the researchers are trying. I think
Dr. Faustman’s ideas are interesting, and would like to see her receive funding.

There is also some evidence that Type 1 and 2 are on a spectrum rather than being totally distinct – some researchers have identified auto-immune features in Type 2, although I think that still needs to be replicated before it is widely accepted. Plus the fact that some Type 1’s develop insulin resistance in adulthood, and have the metabolic syndrome that is associated with Type 2.

So I think that diabetes in general should get more research funding, and I would be plenty happy to even see prevention, although I might never have a cure.

When I was a kid, and dad was ailing quite a bit from his Diabetes… I would often wonder quietly to myself why I never saw any fund raisers for Type 2. It’s very sad, and depressing for a child… because it makes you think somehow that people don’t care enough to want to cure your dad. I know things are a lot more complicated than that… but I wanted to help my dad find a cure, too, you know? I still get kind of jealous and upset about it… as though we don’t deserve fundraising, too, because we could just “diet” and it would go away… Well, dad was as thin as could be… diabetes was still there, as awful as ever. :frowning:

I beg your pardon Lauren .In my defense and actually I was not going to defend me but here I am : My intend is not to bash Mike’s discussion. I and as others here have mentioned as well , I do not want to waste my energy , my time on this type of news article anywhere.

Writing the Editor instead maybe more useful .

Good point SF Pete. As Nel said, these discussions have become quite common on TuD and I think that on average they are becoming less and less conflictual…

The only point that I really see still matters is for research. I still believe that the cures will be quite different (I could be wrong) and I think that there is a lot more emphasis on type 2 in government funded research.

As far as OUR community goes, I agree that unity is better, but how to maintain that and still draw attention that research (like stem cell research) is vital for type 1 research and there is too little funding out there for type 1…