the sheet blog
Type 1 Diabetics are Different: Their Life Depends on Insulin

September 26th, 2010

I sometimes think those of us advocating for type 1 (juvenile) diabetics would be better off if our disease had a different name.

The vast majority of diabetics are type 2 diabetics. Genetic and metabolic studies have revealed that type 2 diabetes is a large group of diseases that range from seemingly healthy people with high glucose after meals to people with declining insulin secretion who require insulin. Type 2 diabetes has a strong inherited component, with identical twin concordance of 90%. Most type 2 diabetics are never diagnosed, going through life unaware of their diabetes. Many can control their diabetes with diet and exercise alone. Many take pills of various sorts and some require insulin.

In contrast only a small minority of diabetics are type 1. Type 1 diabetes is autoimmune and always features near total death of insulin-producing cells. Type 1 diabetes is weakly inherited with identical twin concordance of 30%. All type 1 diabetics are diagnosed — the symptoms cannot be denied. And most important, type 1 diabetics will die without insulin injections — they are utterly dependent on insulin to live.

Yet these two very different diseases are enmeshed in the public mind.

For type 1 diabetes advocates this can be a blessing. Of course it is good to share the name of the number one global health health crisis. If type 1 were cured tomorrow diabetes would remain the biggest health threat in the developed world from type 2 alone. Because insulin loses its potency with age, by some definitions over half of seniors have diabetes, so “diabetes” is a huge and growing disease, growing as more people live to an old age and more populations adopt the low exercise, high calorie life of the developed world.

But the role of exercise and eating highlights another big difference. Most people with type 2 diabetes can be cured by the seemingly simplest means: eating reduced amounts of higher quality foods coupled with regular aerobic exercise. Type 2 diabetes is a lifestyle disease in all but its most severe manifestations. The general knowledge that diabetes is linked to lifestyle emerges in the notion that diabetics (including type 1 diabetics) can mend their ways and cure themselves if they had the will.

Type 1′s know this is nonsense. In our disease the immune system attacks the body, killing the cells in the pancreas that make insulin. The process usually takes years and cannot be reversed. There is not a single convincing case of spontaneous remission in millions of recorded type 1 diabetics — it is truly irreversible. And try controlling type 1 diabetes with diet and exercise! That indeed was the best therapy available pre-insulin. Starvations diets could extend life by months, but diabetes was nevertheless a death sentence within a year.

I have been asking around for suggestions relating to a type 1 diabetes rebranding. A popular idea is to use the name of a type 1 diabetic celebrity. But the preference for the name seems to be generational. Nick Jonas’ disease? Adam Morrison’s Disease? MTM’s Disease? Bret Michael’s Disease? Anne Rice’s Disease? Jay Cutler’s Disease? We’d have to keep changing the name to keep up with the times. Who now remembers Lou Gehrig and his disease?

One suggesting is Incurable Diabetes, or ID. It stops you in your tracks and is a good contrast with type 2. But I hope that the Islet Sheet will make it Curable Diabetes.

What do you think is a better name for our diabetes? Scientific names over the centuries have included diabetes mellitus, ketosis-prone, juvenile-onset, type 1, and insulin-dependent. So there is precedent for a name change.

Put your name idea in the comment section, with a rationale, and we’ll pick the best for a poll. Then maybe we’ll petition the doctors for a name change.

Scott's Opinion.
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20 Responses to “Type 1 Diabetics are Different: Their Life Depends on Insulin”

  1. JP Marat says:

    I have now reached an age when endocrinologists look at me after learning that I’m diabetic and exclaim, “Gee, you must have lost a lot of weight. Is that helping?” When I explain that I’m type 1 and have been since I was 14, they always fall silent and inwardly marvel that I am somehow still alive, as though they were looking at a 1000-year-old goldfish in a museum.

    Perhaps the worst problem with the conflation of type 1 and type 2 diabetes is that since type 2 patients are routinely shamed by doctors and the general public alike for having failed to exercise self-control and developed their disease as a result, in type 1 diabetes ‘control’ is also important, but in the very different sense of daily blood sugar control after the disease has become manifest. The common feature of ‘control’ being an issue in both diseases causes the medical profession and the public alike to emphasize blame as the central approach to both conditions, ignoring the fact that controlling blood glucose in a labile type 1 diabetic with the means currently available can be simply impossible and can cause brain damage or death if the futile efforts at glucose normalization are accidentally pushed too far. So the ‘lack of control’ type 1 patients exhibit is typically the expression of their prudent avoidance of potentially lethal hypoglycemia, which is very different from a type 2 diabetic’s lack of control in leading a sedentary life while amassing a huge weight gain.

    You could try giving type 1 diabetes an entirely different name from type 2 diabetes in order to distance it as much as possible from its false cousin. Thus it could be called ‘Autoimmune Beta Cell Disease’ or ‘Autoimmune Pancreatic Disease,’ though the problem with both of these terms is that they make it seem as though type 1 diabetes is some extremely rare, totally bizarre medical oddity like Hutchinson-Guilford Disease or von Recklngshausen’s Disease. Perhaps a new name that would both separate type 1 diabetes from type 2 yet also remind people that it is a fairly common and important public health problem would be to call it ‘Autoimmune Diabetes.’

  2. Type 1 diBetes should keep it’s name just as it is – Diabetes. The huge irony of the recent rise in type 2 diabetes is that it will most likely lead to a cure for type 1. If all these obese rich westerners wake up to diabetes and start funding research that could lead to a cure, then most likely type 1 diabetics will benefit. Don’t put up walls – where’s the advantage in that?

  3. Personally, I like “Autoimmune-Mediated Diabetes Mellitus”; that accomplishes something the current vague numbering system did not do: it actually describes the disease by it’s etiology, not by how it is treated. I also believe it also says that no amount of diet changes or exercise is going to resolve it, something the current numbering scheme fails quite abysmally to do. Furthermore, it also enables the even rarer cases of idiopathic type 1 diabetes to be distinguished in a way that group cannot today.

  4. Scott King says:

    I think the autoimmune angle is promising. It associates T1D with diseases like lupus and rheumatoid arthritis that people know cannot be prevented.

  5. anne says:

    aren’t both types autoimmunity ‘problems’ .? How about naming type 1 diabetes after that d-rned virus that lodges inside of the pancreas in the first place causing the beta cells to be attacked ruining it. also isn’t there a genetic predisposition to getting type 1 – like becoming an alcoholic.?

  6. Type 1 says:

    Rowbotham you obviously do not have type 1 and will never understand some of the emotional distress children and adults are going through today with disease. EVERY doctor in my area shows an incompetence when it comes to the disease and I would be long dead if I listened to them. Thank god for the great endocrinologists at CHOP.

  7. Scott King says:

    Anne, do you know what virus causes autoimmune diabetes? In my thirty years’ of going to meeting I have heard at last five candidates, none of which panned out.

  8. Mike Barton says:

    I have been thinking about this issue a lot of late. My 8-year-old was diagnosed with Type 1 last year. We have had everything from people suggesting eating some supplement could cure him, to having to explain to family a couple of times that he will not grow out of it — a misunderstanding that, I think, arises from the use in the past (and continuing with the J in JDRF) of Juvenile Diabetes. I suggest the community use “insulin-dependent diabetes,” or IDD. It stresses Scott’s point in the title of this post, that their lives depend on it, and it does not assume that it is incurable. It also, while not completely accurate in name, does not rule out Type 2′s who require insulin, but as you say that group is not huge. I do not know. Works for me. But the kids on Twitter seem to like T1D, or #t1d. :)

  9. Joe Mellitus says:

    I’m interested in the issues arising from T1 and T2 being looked at the same for insurance purposes. The sheer mass of people with T2 is driving insurance costs up. As a Type 1, I don’t want to be perceived as part of this problem – or the general problem of driving health care costs up avoidably. I also don’t want to be discriminated against because I have diabetes – a growing problem exacerbated by the number of people with both types, but driven by T2.

  10. anon says:

    I have a sibling with fairly labile T1D, and of course this article draws real attention to the need for people to also learn about T1D. However, I would not support a rename. What I would support would be initiatives to get more researchers behind studying type 1 as well, instead of an “and we excluded T1D due to smaller sample size and less percentage of total diabetes complications”

    I think a good place to start would be to let people know that T1D, considering them at an amount of 5% of the total cases, costs the nation almost 14% of the total diabetes costs per year. That might wake em up. There is nothing I hate more than running into research or hasty article which talk about both type 1 and type 2 and then predominantly talk about “diabetes” I never know if any of the info will be useful specifically to T1D!

    I never cease to be amazed by the levels of inane comments people would make to me that they might not say to my sibling’s face, including passing quick judgement on their assumed lifestyles. Even when I try to point out that they have type 1 before they stick their foot in their mouth. I think the more educated on the topic I expect someone to be however, the worse it is.

    Medical student–”type 1? well thats easier isnt it? they just have to take insulin.”
    astounding. simply astounding.

    Aquaintances–”Hey since your sibling has diabetes, you probably shouldn’t be eating that”
    beg pardon? I go to the gym 5 times a week, thankyouverymuch not that its relate-able and btw NYFB. Hmph!

    Layperson–”How old are they, 28? thats so young, they better hit the gym if youknowwhadImean eh? eh?”
    This is easier, just tell them so they know.

    However the worst I think is underestimation of severity and the day to day effects on an individuals life. And the fact that T1D being what it is, there are completely different considerations. A 75 year old man prevented from keeping her drivers license is different than the 16 year old who realizes they may never be allowed to drive. The struggling mid twenties individual who can’t seem to find a balance in having a job when they take too many sick days. And then the employer would have the nerve to think its the employees fault? The 11 year old who becomes publicly embarrassed when an un-knowledgeable teacher discovers and outs their needles as drug paraphernalia. Or any amusement park for that matter. The woman who wants to find a partner to raise a fam with but who doesn’t know how to say that she may not be able to bear children safely. The high school senior who wishes college admissions understood their hardships in school, despite which ever “perfect diabetic” they may have personally known.

    Tssssss

  11. Dan Jeff says:

    Toward the end of March, 2010, I began working on new words for High Glucose Conditions, starting with a new word for type 1 diabetes, and progressing to come up with new words for all glucose anomalies and new words for all conditions which currently include diabetes in their name.

    Details of that effort are far too lengthy to address in a single post. Brief chart of the new terms for High Glucose Conditions:

    Old Term ……. New Term

    Diabetes …….. High Glucose Conditions

    Other
    Diabetes
    Mellitus ………. Other High Glucose Conditions

    Type 1
    Diabetes …….. Insulinitis

    Type 2
    Diabetes …….. Cellosis

    Prediabetes … PreCellosis

    Gestational
    Diabetes …….. Gestational Cellosis

    MODY ………… Diminosis
    (Mature
    Onset
    Diabetes
    of the
    Young)

    Neonatal
    Diabetes …….. Neonatal Diminosis

    Diabetes
    Insipidus …….. Insipidus

    - – -

    I encourage everyone to read all of the websites listed below, consider the suggested names, and ponder the possibility of supporting these names to address the issues brought up in these articles. Thanks for your consideration.

    References:

    Diabetes Bubble / Diabetes Bubble Burst
    http://tinyurl.com/diabetesbubble

    Table : Nature of the Diabetes Name/Names
    Problems and the Solution
    http://tinyurl.com/diabetesnamenamesprobssolution

    Reasons for Using Diabetes Word(s)
    http://tinyurl.com/usingdiabetesword-words

    What is Insulinitis?
    http://prohuman.net/insulinitis.htm

    C.ure I.nsulinitis A.ssociation
    http://prohuman.net/cureinsulinitisassociation.htm

    What is Cellosis?
    http://prohuman.net/cellosis.htm

    Reasoning for Using Insulinitis and Cellosis
    http://tinyurl.com/reasons-insulinitis-cellosis

    What is Diminosis?
    http://prohuman.net/diminosis.htm

    - – -

    Graphics:

    Insulinitis — Glucose Tests
    http://prohuman.net/insulinitisglucosetests.jpg

    Insulinitis — Insulin
    http://prohuman.net/insulinitisinsulin.jpg

    Insulinitis — Significant Short-Term Risks
    http://tinyurl.com/signifshorttermrisks

    - – -

  12. Peter Thomas says:

    https://www.facebook.com/group.php?gid=280698979764&v=app_2373072738#!/group.php?gid=280698979764

    This is a Facebook page I created to answer this very question
    Rename Type 1 Diabetes.

  13. Karen says:

    Having watched my little brother dignosed at 3 with Type1, who is now a 17yo teenager. Life is totally different for a child like that. He has NO clue what it is like to be ‘normal’. Now that I have been dignosed with SLE (lupus), I have noticed that we lump lots of disorders/dieases together that are treated differently but have some things in common. I can’t tell you the number of times people act like my lupus is nothing because ‘I knew someone with lupus once and you’d never been able to tell’ or better yet “I’ve got that, its nothing”
    I like autoimmune insulin dependent chronic diabetes (AIDC Diabetes). To me that seems to cover your bases. I mean even here, where you could assume that the people reading and responding to this would know the difference but you still see responses that are way off base.

  14. Heather says:

    We all know type 1 and type 2 and we all know the difference, it is the media and sad to say, some media doctors, who insist on lumping both types together. If the media always put which type they mean in the headlines instead of half way through the article, it wouldn’t need changing!!!! Instead of ‘DIABETES EPIDEMIC’ they should put TYPE 2 DIABETES EPIDEMIC. Not rocket science is it? However, I do agree that we should have separate names for the two MAIN types – perhaps ‘Incurable Diabetes or Unpreventable Diabetes for type 1 and Preventable Diabetes for type 2?

  15. Gareth Hay says:

    Some good suggestions, my half jokey ones :

    Type 1 : Proper Diabetes
    Type 2 : Lifestyle Diabetes

  16. Chris says:

    My brother is type 1 diabetic, and I think I get more offended than he does when people are ignorant in regards to the difference about diabetes. For instance, the British GCSE exam boards seem to not know the difference, meaning that teenagers in the UK are learning that diabetes = type 2 diabetes. When my teachers made the mistake, I confronted them about. When my brother’s teachers made the mistake, he just shrugged it off. He’s pretty laid back about it.

    Oh… And he proposes renaming type 1 diabetes “Scott Malkinson disease” or “Malkinson’s” after the South Park character. Seriously… YouTube him if you don’t mind being a little offended. *facepalm*

  17. Molly says:

    I have had Type 1 Diabetes for 21 years, along with two other members of my family, and I FULLY support a name change for Type 1 Diabetes!

    I recently completed my senior research project in college, and my group and I set out to determine if the PA media distinguishes between Type 1 and Type 2 Diabetes, and if articles about either type contained information that could mislead the public about Type 1. 55.3% of articles contained some type of misinformation or misleading information about Type 1! This is huge because people get most of their health-related information from the media. This means that the public is being fed a steady diet of misinformation about Type 1, particularly that Type 1 and Type 2 are similar in cause and treatment (which WE all know, they are definitely not!)

    We have completed our research at this point and are currently in the process of writing up the results. I would love to do something meaningful with the results like get them published or otherwise promote the idea that Type 1 and Type 2 Diabetes need to be clearly and accurately represented in the media, and that using the word “Diabetes” without mentioning which type is not acceptable. However, I’m not sure how to pursue that at the moment.

    Anyway, here are my two ideas for a new name.

    Auto-immune Mediated Islet Destruction, or AIMID

    Auto-immune Mediated Insulin Deficiency, also AIMID lol

    Thank you for writing this wonderful article and spreading the word about T1D needing a new name! I couldn’t agree more!

    Molly

  18. Jude says:

    Dear Scott,

    thank you for your interesting post and everyone else for your fascinating replies. As a Type 1 myself, diagnosed suddenly at 35 at the peak of my personal fitness, I can only commiserate with everyone who has experienced the confusion with Type 2 and it’s often extremely discriminatory and negative nature.

    In the last few years, I have heard everything from ‘it’s your own fault for eating too much chocolate’, ‘you are not suitable for this job because your health condition indicates you are lazy and don’t take care of yourself’, to ‘why don’t you just take you fat pills (while looking confused at my slim body)’…

    Now, please don’t misunderstand, I have absolutely nothing against Type 2 Diabetics and do not wish in any way to trivialise or undermine the problems they have, as I understand that this discrimination is 90% aimed at them, and it is wrong, unfair and down right ignorant and unhelpful!

    However, and I have argued this in many diabetic forums, this confusing of type 1 with type 2, when they are essentially very different conditions, with different etiologies, treatment regimes, and vitally, levels of acuteness, is a problem for many Type 1s. Why? Well because instead of having our own nomenclature, we are grouped with a different disease and all the misunderstandings and potential for confusion that entails… it’s like getting cancer and then, (no insult intended), being treated like one is whinging about a bad cold! However, what many, including Type 2s, forget is as yet Type 1 cannot be reversed, and (note well) that without food and insulin, most type 1s would go into a coma within 48 hours and very likely die soon after…

    Please, just for a moment think about that? Imagine what that kind of axe over your neck feels like and what it does to your life? Imagine then, what it feels like to have the discrimination that many Type 2s suffer heaped on top, when it is not possible for you to be in anyway responsible with lifestyle and weight issues because Type 1 is essentially triggered in a different way… trust me it doesn’t help!

    In fact, it makes a bad situation and very difficult time, much, much worse, especially when medical practitioners confuse the conditions. The ‘fat pill’ comment I mentioned above was made by a nurse, and shockingly, I believe many of the medical text books are contributing to the confusion because they fail, (I’ve checked all the major texts), to highlight the level of long-term acuteness in Type 1 and seem to end treatment with insulin therapy as if it is a de facto cure! One book had only three short paragraphs on Type 1 and five pages on Type 2! There was even less on poor MODY suffers and the other types.

    Consequently, I can only support a change in the names of Type 1, Type 2, etc. I think it would benefit everyone and provide further important clarity and definition. I think Dan Jeffs’ work on a new name, which I’ve followed elsewhere, is quite simply brilliant (well done again Dan!).

    I’d also like to recommend the Facebook ‘Rename Type 1 Diabetes’ page set up by Peter Thomas if anyone would like to support the cause of changing the name. Check it out on Facebook.

    Best wishes to all,

    Jude

  19. Gareth Hay says:

    Insulinitis is a non-starter.

    Type 1 is not an inflamation of anything .
    Medics laugh at the proposal.

    Also, there are papers circulating that suggest the absence of insulin may not be the problem and that glucagon plays the important role. Might be folly to name it and involve insulin if it turns out glucagon needs controlling.

    Type 2 should be named Insulin Resistance and type 1 should retain diabetes.

  20. Anything not containing the words “insulin-dependent” might work, though after 43 years with DM1, I am not too concerned with what it is called. It’s my knowledge of its management and self-management that is important to me.

    “Insulin-dependent” seems ridiculous to me, since basically EVERY MAMMAL is insulin-dependent. No dog, cat, horse, bear, ape, human being can live without it. Even fish (once considered as a never-ending source for commercial insulin) make and use insulin and are therefore “insulin-dependent,” whether they have some form of diabetes mellitus or not.

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