117 Responses

  1. Brian (bsc)
    Brian (bsc) April 18, 2013 at 5:37 am | | Reply

    I am truly sorry that anyone, particularly children suffer from misunderstandings about their condition and continued problems in getting proper diagnoses and treatment. But diabetes is just so complicated, if the medical experts can’t figure out the categories, what is the point of a name change. And as a T2 who has struggled for years getting a proper diagnosis and finally had to force the system to give me insulin because of my beta cell loss, I feel these efforts at dividing us are harmful.

    The path that led us here may well be different, but the end state is the same. I agree with Scott, we should remain united in our efforts to advocate for all of us that struggle with diabetes.

    1. Jillian
      Jillian April 20, 2013 at 11:03 am | | Reply

      It’s not about the divide in the D community…I’m sure you are very, very sorry about the problems children encounter, but you do not understand the dangers these kids face on everyday basis. The hostile attitudes of the general public toward T2 influences their behaviour and decisions when it comes to helping kids with T1. Symptoms of lows are ignored by people who care for these kids (teachers, coaches..) and little ones end up in the hospital. You know what? I’m gonna go on a limb here, and say that maybe there SHOULD be more of a divide in the D community. Maybe parents of T1′s are sick and tired being pigeonholed, criticized, judged, and scared out of their minds every time their kids go to school. T1 is scary and stressful as it is. A name change MIGHT alleviate some of that unneccesary stress, while accepting the status quo, won’t do diddly-squat.

      1. Mary Dexter
        Mary Dexter April 21, 2013 at 9:09 am | | Reply

        Changing the name won’t correct the above problem. Better education, less misinformation will. The hostile attitude toward Type 2 needs to go. Telling people “I’m the other kind.” reinforces that attitude. It says, ” I’m not the kind you can bully; they are.” No wonder people keep getting the two mixed up.

        1. Tami
          Tami June 4, 2013 at 7:01 pm |

          We live in an information overload era. There is no way we are going to educate and inform EVERYONE that the kids will encounter before they hurt the child’s feelings. There should not be hostility to any diabetic, regardless of the type, but it happens every day. Grown adults are unkind to children with T1 because the adults had to be told of their condition for safety. Sometimes, its the medical ID bracelet that gives it away. The child doesn’t have a choice, it’s accepting judgement in order to hopefully have help in the case of an emergency.

        2. Tami
          Tami June 4, 2013 at 7:13 pm |

          We live in an information overload era. There is no way we are going to educate and inform EVERYONE that the kids will encounter before they hurt the child’s feelings. There should not be hostility to any diabetic, regardless of the type, but it happens every day. Grown adults are unkind to children with T1 because the adults had to be told of their condition for safety. Sometimes, its the medical ID bracelet that gives it away. The child doesn’t have a choice, it’s accepting judgement in order to hopefully have help in the case of an emergency.
          It floors me every time I fill out a medical history form at a doctors office and they have a box for diabetes and no prompt for which kind. Even our physicians do a poor job at respectfully clarifying. It is important for them to want to know before evaluating a patient. Heavens!!!

  2. Joe
    Joe April 18, 2013 at 6:09 am | | Reply

    In my humble opinion I can understand why Mom’s with T1D want the name change. It is due to the fact in their minds that T2D is caused by bad diet, etc. etc. etc. There is so my division now amongst T1′s & T2′s that a name change would just make things worse.

    I read some of the other blogs and someone said on there that “we all have the disease called Diabetes”. It could not have been better said.

    1. Allan
      Allan April 26, 2013 at 6:04 am | | Reply

      I think you might of hit it right there Joe. It’s mothers wanting to protect kids primarily wanting this. As a T1 since I was 4 (32 years back) and growing up with it, and the “how are you diabetic?! you’re as skinny as a rake”, you educate people. Yes it can get tiring, or something we wish we wouldn’t have to do. But educating the idiot masses is a better approach.

      I understand mothers being overly protective, mine is still awful for it. And also how it makes them feel a bad parent as they believe other people are thinking they are due to the “obese kid” comments.

      But changing the name will accomplish nothing. They change names often enough with IDD’s and NID’s and all the other daft things over the years. Through in confusing with LADA and such, and it’s an even bigger mess.

      I am a diabetic. Yes type 1, but primarily, I am diabetic if anyone asks. Is that a catch all, yes it is.

  3. Jamie Perez
    Jamie Perez April 18, 2013 at 7:11 am | | Reply

    As one of the mother’s who has created the petition, I appreciate your interest in the cause and I respect your opinions. I, especially, respect the call for unity that you have quoted above. We couldn’t agree more that we are all in this together. We have truly embarked on this endeavor with that spirit in mind. Our petition is not about removing T1′s association with T2. We recognize that both conditions are destructive diseases that are forms of diabetes. It is not about T1 being subjected to the stigma of T2. Its about the misconceptions surrounding both types. In a way, it IS about the stigma attached to T2, but not in the sense one might think. It’s about that stigma being applied to both T1 and T2 and how that inhibits education, awareness and fundraising towards better treatment and a cure for all types of diabetes. It is about the confusion caused by designating both conditions with just a number and how unique names for each type of diabetes that reflect the true nature of each condition will lay the foundation for better education about our diseases.

    While the debate regarding our petition is obviously quite divisive, the intent and content of our petition should not be. We just want names for each type that specifically indicate the nature of each condition- something the numbers 1&2 do not. Our goal is for this petition to benefit all of us through increased clarity in education and awareness, which in turn will facilitate better care and more productive fundraising towards better treatment and a cure. Of course, it does not directly benefit progress towards a cure, but it does so in an important indirect way. We believe that clarity in the names is the first step. It won’t happen overnight, but it is a much needed first step.

    While we would never compare cancer to diabetes, a look at the way various cancers are named validates our purpose. I can’t imagine the confusion if all of those types of cancers were just called Cancer Type 1, Type 2 etc. How would each particular cancer educate and spread awareness, let alone advocate for a cure? We feel that the key to all diabetes campaigns is education and awareness and that designating the types by something other than a vague number, would provide much needed clarity to build upon to achieve all of our other goals.

    As we are progressing with this petition, I keep thinking of the Einstein quote, “Insanity is doing the same thing over and over again, yet expecting a different result”. Diabetes educational campaigns and personal education of others should and will continue, but with the added boost of names that actually mean something. Numbers 1&2 do not. It is obvious that the discord between the T1 and T2 communities already exists. We believe that clarity between the two types will do nothing but help unite the diabetes community not divide it- confusion divides, clarity unites.

    Anyone wanting to read the petition and judge for themselves can click on the embedded link in Amy’s post- “new online petition”. Thank you.

  4. Ginger Vieira
    Ginger Vieira April 18, 2013 at 7:38 am | | Reply

    My favorite point in this is near the end, about the fact that we don’t know that much about diseases that WE don’t have or know loved-ones living with…and are just as guilty as misunderstanding those diseases in the same way that non-diabetics and the media misunderstand our own.

    Well done, Amy.

  5. Kate
    Kate April 18, 2013 at 8:15 am | | Reply

    “They want to stop all the dumb, hurtful and negative comments coming at their families” So do people with type 2! The stereotype of a fat, lazy person when referring to diabetes does nothing but hurt us all. I agree with Ginger, it’s important for us to remember that WE know about diabetes because we live with it. We don’t know about other, equally distressing, diseases and could make equally hurtful comments without even realizing it. Great article.

    1. Jamie Perez
      Jamie Perez April 27, 2013 at 11:03 am | | Reply

      Amy’s words there- not ours. Your point is exactly one of the reasons for our petition. We are all obviously going to disagree, but anyone reading our petition would see that its not about the stigmas of T2 being applied to T1, its about the stigmas being applied to BOTH T1 & T2 and how that inhibits the education process, and therefore the fundraising process as well. Its quite amazing that the vocal individuals in the D community are calling very loudly for unity, yet they are the only ones making this into something divisive. There is not a divisive word or intent in the petition. Its is designed to help all of us by bringing clarity to the two sister diseases of T1&T2. Agree or disagree that a name that actually means something will indeed help the education process, but this is being made into a divisive issue by those debating against it. Read the petition. Agree or disagree, but don’t call it something its not.

  6. Sue/RFamHere
    Sue/RFamHere April 18, 2013 at 8:16 am | | Reply

    Well said! Unfortunately the creators of the name change petition can’t see that it’s causing more division that collaboration. We need to focus this energy instead on education and advocacy!

  7. Denise
    Denise April 18, 2013 at 8:29 am | | Reply

    I personally like “the pissing evil” that D used to be called hundreds of years ago, but I’m old school. :)

    Or you could not say the word diabetes at all and if someone asked just say, “I’m insulin deficient–my body doesn’t make insulin so I need a shot.” This just explains the problem clearly without using a name that no one understands anyway. T2 would just say “I’m insulin resistant–my body doesn’t make enough insulin so Itake extra or take meds.” If someone said, I have xyz-phobia, you wouldn’t know what they meant. If they said, “I’m scared of getting my hair wet, so I wear a hat,” then you’d know and that would be the end of it. It doesn’t have to be a name change or a long explanation, just a few words that say your pancreas sucks.

    1. bn
      bn July 14, 2013 at 9:42 pm | | Reply

      Hear, Hear!

      Insulin resistance and Insulin deficiency are much clearer terms, and would cover the grey area of many of the other types. As in “I was diagnosed with gestational insulin resistance” or “pancreatic surgery has caused insulin deficiency”.

      And I agree the stigma of how/why someone suffers should be removed…every case is different.

  8. Eileen
    Eileen April 18, 2013 at 8:33 am | | Reply

    I’m tired of people looking at my 66-year old body and presuming I’m type 2. I vote for a name change. How about Autoimmune Diabetes?
    Juvenile, Insulin Dependent, Type 1 since 1963

  9. Andrea
    Andrea April 18, 2013 at 8:52 am | | Reply

    Certainly education is the key but so is removing the stigma for ALL of those living with diabetes. I personally am not content with the status quo of the current “education.” What is being done to change it up in a new attempt. The blogs, etc are great by the DOC but doesn’t it seem as though we are only educating ourselves? I’m not saying that the connections are worthless, not at all. Those putting them out there have really helped me along the way. This is VERY important.

    Personally I’m not ok with the whole media thing, it seems as though being understaffed is an excuse for the entitity. Where is the accountability?

    What’s in a word? Much. Look at the terms generations used before us to make racial references/insults. Look at the Equal sign example just recently. Society is changeable and I think to brush it off as “we’re not going to change them” is admitting defeat.

    Nowhere have I read in the petition itself that it is divisive, some of the comments maybe and that is horrid. No one should feel as though they are a second class citizen. That is what the current stigma of diabetes in general makes makes feel and that is no ok no matter your “type”. We as a D community need to scream loudly together, no matter how “long” you’ve been at this. All need to band together and look at why education is failing and grab it by the horns. It’s not enough to just say this won’t work, what we need is education.

  10. Scott Strange
    Scott Strange April 18, 2013 at 9:33 am | | Reply

    Great piece, Amy. Thanks for the shout-out!

    Personally, I am what is termed a “double diabetic.” Diagnosed with T1 in 1970 and then as a T2 about 5 years ago. So I have an overactive T-cells and insulin resistance, where do those of us with that challenge fall? Are we yet another classification?

    I’d rather see this effort spent on trying to find what triggers both T1 and T2

  11. Kristin W
    Kristin W April 18, 2013 at 9:52 am | | Reply

    Have been living with T1 for over 30 years and heard it referred to as many things – although never before “the pissing evil” – I like that! My perception is that people may assume you are fat and lazy and that is why you “got diabetes,” but they don’t really care if that is true or not. Changing the name would not help them care WHY you got diabetes or understand what kind of diabetes it is. The people who need to know the differences between all the ways you can get diabetes, already know, IMHO. Maybe I would care more, if my “lifestyle” were stygmatized more, as it is/was in the AIDS epidemic/activism as played out in the 1980s/90s, but I just sort of don’t care what these people think, who don’t endeavor to understand. Relatively speaking, they are bystanders. If they were to want to understand, a name change wouldn’t help them. I’m on Team Amy on this one.

    1. Jerry Nairn
      Jerry Nairn April 19, 2013 at 4:18 pm | | Reply

      I’ve had the disease for a long time, too, and in my experience, it is not true that people who need to know the difference do. I am frequently amazed at the people who have no clue about diabetes. They have medical degrees, they work in pharmacies, they appear as experts on TV…
      There is a boundless amount of ignorance out there, and it is not restricted to “the general public.”
      If it was just a problem with the general public, it still would not be a reason to stick with the meaningless t1 and t2 terms.

      1. Mary Dexter
        Mary Dexter April 19, 2013 at 5:34 pm | | Reply

        Too often, it’s the doctors and nurses to whom our clinics assign us who are the most dangerously ignorant. Then it does matter because it results in denied access to insulin. Since my rediagnosis in 2004 (initially dx as Type 2, revised to LADA), I’ve had to fight to refill my insulin Rx 4 separate times. That’s every couple of years. Type 2 is the category everyone who isn’t a skinny kid gets dumped in, with lots of blame heaped on top. It’s a meaningless term with second-class connotations. Too much of what is supposedly education merely reinforces the myths and stereotypes.

  12. Denise
    Denise April 18, 2013 at 1:05 pm | | Reply

    The “pissing evil” is from the middle ages. But I also love the ancient Roman dscription, “a melting down of the flesh and limbs into urine.” I think that pretty much sums it up.

  13. Terry
    Terry April 18, 2013 at 2:30 pm | | Reply

    Poor communication is often at the root of social problems. Unclear and vague terminology undermines clear communication. Renaming Type 1 and Type 2 Diabetes to more descriptive names will enhance communication and make our education challenge a little bit easier.

    Is it worth the effort? Of course, it is. Diabetes is a relentless challenge no matter the type. Many of us philosophically adopt the attitude that if we can make our personal diabetes situation better, then it is worth the effort. We choose to not get bogged down in the enormity of the big task that Diabetes represents and just try to make the immediate diabetes problem we have (e.g. better control of post-meal BGs) a little better. The little steps do add up and our circumstance does improve.

    Renaming Type 1 and 2 diabetes more descriptively will not fix the public ignorance surrounding our daily challenges. It will, however, make things incrementally better.

    The D-mom petition writers have an immediate legitimate concern for the safety of their T1 children. Their children often supervised by various adults like coaches, teachers, substitute teachers, teacher aides, that need to understand the critical differences between Type 1 and Type 2. A soccer coach, for example, may decide to keep a struggling T1D child on the field based on his T2 knowledge. I know that parents spend a lot of energy directly educating these kinds of adult supervisors but their job would be a little easier if the terms were not so ambiguous.

    Just because something has always been screwed up does not argue against trying to make it better. And adopting descriptive terminology for these diabetes names does not exclude pushing for research, better treatment methods, and an ultimate cure. If anyone can walk and chew gum at the same time, it’s a person with diabetes!

    I not only support this petition but also salute the articulate and emotion constrained tone used by the petition writers.

    1. Eileen
      Eileen April 18, 2013 at 5:18 pm | | Reply

      I’m with you on this, Terry. Your soccer coach example is right on.

    2. Natalie Sera
      Natalie Sera April 19, 2013 at 11:07 am | | Reply

      NIDDM and IDDM were about as descriptive as you could get, because NIDDM included T2s who did use insulin, but were not considered dependent on it. Theoretically, NIDDMs would not die if they didn’t have insulin; they would just run high BGs.

      So did that help? Not really. It just confused people, which is why the medical associations changed the names. As a veteran myself (I was online on mailing lists before the current DOC even formed), I remember people asserting that because they had started insulin, they were now IDDM.

      The other thing that people with T1 seem to be unaware of is that T2 can cause medical emergencies, too. Even people on diet and exercise CAN suffer debilitating lows, because their BG regulation is screwed up. Hypoglycemia episodes often precede the actual diagnosis of T2 diabetes.

      We all have a lot more in common than differences, and I don’t see where children with T1 are being harmed by the current names, except when they see junk magazines in the grocery store which trumpet the reversal of diabetes if you just follow this special fruit diet. But those publications harm all of us, and especially T2s who may not know any better, because they get much less in the way of education and support from actual medical professionals. They are MUCH more vulnerable to bad media coverage than T1s are.

      So, yes, we need to work together, and recognize that everyone with diabetes has their struggles, and have some compassion for those who ARE being stigmatized. And work to erase the stigma and erase the bad information that is so common.

      1. Jerry Nairn
        Jerry Nairn April 19, 2013 at 11:45 am | | Reply

        Insulin-dependent and non-insulin-dependent are descriptions of treatment, not disease.
        People take aspirin for many different conditions, but we don’t lump them all together.
        People take insulin to treat different kinds of diabetes.
        And some type 2 diabetics would die without insulin, and would be accurately described as insulin-dependent.

        1. Natalie Sera
          Natalie Sera April 19, 2013 at 10:52 pm |

          Yes, Jerry, but that’s not the way the terms were used. They were used to denote T1 (IDDM) and T2 (NIDDM). Which is the point I’m making.

  14. Mary Dexter
    Mary Dexter April 18, 2013 at 2:47 pm | | Reply

    If your pancreas cannot manage your blood sugar on its own, you are a diabetic. If you do not produce enough insulin to keep your blood sugar from soaring, you need to have access to it from an outside source. We are all diabetic. One name. Better education for all.

  15. anonymous
    anonymous April 18, 2013 at 10:05 pm | | Reply

    When someone creates the petition to NOT change the names, let me know so I can sign it. What a pointless exercise.

    We all have a disease, get over it.

  16. Pearlsa
    Pearlsa April 18, 2013 at 11:05 pm | | Reply

    Great post I blogged about the same thing today. We need to unite for diabetes.

    A house divided against itself shall not stand.

  17. Meghan
    Meghan April 19, 2013 at 2:04 am | | Reply

    Great article. As a younger T2 I have often said we need to treat the types as different diseases entirely. I find it frustrating to read generic diabetes literature that is actually geared towards type 1s as though type 1s have valid diabetes that deserves more help because they are victims, unlike T2s. Part of me wants to say that if T1s don’t want to be associated with us then that’s fine with me. But this article raises a lot of excellent points about problems with a name change and has successfully changed my opinion, although not because I think we should all stand together and support each other. I don’t think that’s possible when one type receives public sympathy and the other is the subject of severe judgment of the victim’s person. Excellent article.

  18. Sarah
    Sarah April 19, 2013 at 2:47 am | | Reply

    After reading this article, I followed up with Bob Pederson’s post and certainly empathize. (The blame game is counterproductive and just plain sucks.) I’m not so comfortable, however, with his willingness and the willingness of many of those against the name change to share part the burden of the T2 community with the T1 community at large. Aside from periodic annoyance at playing “type 1 diabetes liaison” for the last 24 years because of the nomenclature, I personally don’t care what either type is called. BUT, I work with families dealing with new type 1 diagnoses, parents that haven’t slept through the night in years, and children learning to navigate T1 both within and outside of their families. It’s not the job of these folks, on top of everything else, to “take one for the team,” educate the masses, and embrace the differences and similarities between types. If a name change can alleviate any amount of that mental weight for kids and families, I’m on board on their behalf.

  19. Karl Fenn
    Karl Fenn April 19, 2013 at 3:38 am | | Reply

    I think in laymans terms most people would not really be motivated to understanding the difference between 1 an 2.
    I think the worst thing for diabetes sufferers is the creation of
    these huge mountains of legislation the new laws introduced
    in the UK are a good example, making cock up’s all the time
    millions being spend on errors and legal cases, when the hospitals have no nurses, I think diabetics have to put thier
    foot down, and show they are not going to become victims
    of legal exploitation, or a means for job creation in the public services, my own view is that all resources should be
    aimed at the cure and control of the condition and nothing
    more, it is important that we do not create a huge state
    machine costing billions, when money should be used
    specifically for the care and welbeing of patients. If the
    resources were placed were they should be people would
    indeed know and understand the difference between type
    1 or type 2, but really anyone should understand that it’s
    pretty basic reading to say the least.

  20. Karl Fenn
    Karl Fenn April 19, 2013 at 3:59 am | | Reply

    As a post graduate Ph.J, I have always had my suspicions about official released figures for the numbers of diabetics in the UK. As the years have passed me I was proved right beyond all doubt.
    I was some what shocked this morning when I obtained the very latest information under the FOI act, It now appears there
    is a plan to test everybody over 40 for the condition, they now
    suggest every year up to half million new cases will be diagnosed, it’s early day’s at the moment, but I think there
    will without any doubt continue to hudge increases in the
    condition over the next decade.

  21. Sarah Howard
    Sarah Howard April 19, 2013 at 5:34 am | | Reply

    Nice article Amy. I think it is worth looking at the research; many children have signs of both type 1 and type 2, others have signs of neither and we don’t know the origin. I think it is not the time to rename since we really don’t know what is going on.

    See this article: “Etiological approach to characterization of diabetes type: the SEARCH for Diabetes in Youth” Study

  22. Let’s come out of the diabetes cave together | Diabetes Hands Foundation

    [...] friend Amy Tenderich made some excellent points on a DiabetesMine post yesterday, which we highly recommend you read. She presents both sides of the debate in a balanced way and stated her position: “I just [...]

  23. Manny Hernandez
    Manny Hernandez April 19, 2013 at 7:55 am | | Reply

    GREAT piece, Amy! I agree with the points you make. You inspired me to blog about this:

  24. Andrea
    Andrea April 19, 2013 at 8:05 am | | Reply

    I’m confused. When I read the petition, I read it as it being an indicator change, not a full name change. I read it as the goal being that we continue under the umbrella of diabetes, because we that is what we fall under. I also read it as wanting to amend only the T1/T2 part. Having seen previous petitions, I’m not the getting the vibe of ‘we t1s don’t want to be associated with the t2s’ of before.

    Genuine question and not trying to stir the pot. Help me understand how this is being read as dividing our community? I understand how some of the comments send that vibe but I’m not seeing how the original petition is calling for “us vs them.”

  25. CJ
    CJ April 19, 2013 at 8:31 am | | Reply

    I think many people’s opinions this issue will be based on their personal experience. As a thin vegan runner who has diagnosed with T1 at age 34 (after having my son) I am all for the name change. I am so tired of people saying “but you are so healthy and you never ate a lot of sugar response” when I tell them I’m diabetic. Even my own family, that has no shortage of T2′s, has difficulty distinguishing between the two. I hear “oh, you got that from your Grandmother” who was an uncontrolled T2 who had both limbs amputated and died an early death at age 60. I imagine this frustration would be even worse for a child or parent of a young child.

    A name change that distinguishes between the two mechanisms for the high blood sugar makes the most sense: autoimmunity vs. insulin resistance. That’s not to say there aren’t folks with both, but I think it should focus on the basics. I also fail to see how naming these two different diseases with the same symptoms appropriately would further polarize the community. I also don’t agree with the “its always been confusing so why change it now”. Previous names were confusing and/or inaccurate (juveniles can get T2 and adults can get T1). Change the names based on the actual mechanisms of the diseases.

  26. Anke Tröder
    Anke Tröder April 19, 2013 at 9:10 am | | Reply

    In Marketing, you would only change a brand’s name if you are sure of the benefits.

    As much as I, as a T1 + a bundle of other automimmune diseases, hate to be given smart ass advice like: All you gotta do is eat right and move more, right?, I do not think a new name will help much.

    People only read up on diseases once they are affected themselves.

    Educating the media and their panic posts: Pointless. They need the scary stuff. Sawn off legs. Blind eyes. Dead people. They simply would not want to know about T1. It simply does not sell as well. Autoimmune has no lobby.

    So. Isn’t fighting together a much better option, instead of fighting each other?

    I have seriously started thinking about this after reading Amy’s post. Until recently, I was all T1 vs. T2. The good, the bad, and the ugly. Right now, I am not so sure anymore.

    And I ove Manny Hernandez’ metaphor of us all being stuck in the same cave. Sounds about right.

    1. Manny Hernandez
      Manny Hernandez April 19, 2013 at 10:14 am | | Reply

      Thanks, Anke.

  27. MikeH
    MikeH April 19, 2013 at 9:29 am | | Reply

    I share the thoughts that Amy has written about above. As someone diagnosed close to 30 years ago with type 1, I’ve been through a few “diabetes name changes” myself and feel that they have had no lasting impact on the understanding of diabetes as far as the general public’s concerned. I’m the same, with the same disease as before, and no name change or different designation is going to make it any easier to understand for those not living with it. This debate isn’t confined to the Type 1 and Type 2 designations, as it’s been going on long before those were being used – and the misconceptions have always been there. Now, science is proving more connections between Type 1 and Type 2 all the time, and I’m not particularly eager to cut a line down the middle and lose that line of research just because I need to explain things a little more when the general public doesn’t understand.

    Personally, I think THIS type of effort that both the ADA and JDRF are engaged in should be the type of thing we, as a community, focus on: a booklet for medical professionals and researchers to use in better understanding the differences. And maybe, that resource can be extended to the general public, media, and so on.

  28. Jerry Nairn
    Jerry Nairn April 19, 2013 at 10:32 am | | Reply

    Yes, we all know that there are just two types of diabetes, monogenic diabetes, polygenic diabetes, MODY, neonatal diabetes, LADA, Flatbush diabetes, gestational diabetes, autoimmune diabetes, insulin resistance diabetes, BCA, IRD, type 1 diabetes, and type 2 diabetes. As long as we use the right type number from those two choices, everyone will know what we’re talking about.

    Most of the time, we will just be called diabetics. We will say we have diabetes.
    But when it comes to a distinction, in a medical context, we should have descriptive terms to use. “I have type 1 cancer” or “I have illness number 5″ just wouldn’t cut it.
    The names type 1 and type 2 were given because physicians were throwing up their hands and saying they didn’t know what was going on with diabetes. If that’s still the situation, then we should keep the terms type 1 and type 2.

    1. Mary Dexter
      Mary Dexter April 21, 2013 at 9:14 am | | Reply

      Maybe the solution isn’t a name change but more accurate education for physicians.

  29. Bennet
    Bennet April 19, 2013 at 11:28 am | | Reply

    Thanks for joining the conversation Amy. Well said.

    My two bits is here:

  30. Kristen
    Kristen April 19, 2013 at 11:47 am | | Reply

    They definitely need different names my 7year old is type 1 and no one understands what that means! I constantly get asked,”will she grow out of that one & is that the bad one?” It’s is Sooo frustrating for us parents!

    1. Natalie Sera
      Natalie Sera April 19, 2013 at 11:59 am | | Reply

      Don’t get frustrated — get activist! If people ask those questions, it’s because they want to know (most of the time), not because they want to frustrate you. Simple canned answers work: “No, she won’t outgrow it”, and “all diabetes is bad.” I know you get asked these questions over and over again, but each time, it’s an opportunity to educate someone, and you don’t have to go into great depth, you just have to have a little patience, and the desire to help us ALL by your advocacy of spreading correct information. NO ONE outgrows diabetes, and all of it is bad. As simple as that.

    2. Rose
      Rose April 19, 2013 at 1:19 pm | | Reply

      Kristen, while I’m sorry that your family has to deal with the ignorance of others, changing the name will do nothing. When people hear ‘diabetes’ they automatically have a certain image in their minds. You are saying that you want your child to escape whatever confusion or stigma is associated with Type 2 diabetes. Well, let me tell you, as a Type 2 diabetic I too would like to escape it! Unfortunately I can’t, so the best thing we can all do is inform those who are misinformed. No, I did not give it to myself, no your child will not grow out of it. It’s frustrating, but not difficult to educate.

      1. Kristen
        Kristen April 19, 2013 at 2:49 pm | | Reply

        We will just have to agree to Disagree. An adult changing their diet and a child getting 4 shots a day is totally different.

        1. Meghan
          Meghan April 19, 2013 at 3:29 pm |

          I’m concerned about your comment about an adult changing her diet versus and child getting four shots a day. I think this is the exact type of problem that is creating a stigma, the assumption that type 2 diabetes is just about diet. And there are a lot of type 2 diabetics who end up having to take a lot of insulin. I’m sorry to say Kristin that your comment here is an example of perpetration of the stigma that is the problem we are discussing.

        2. Jerry Nairn
          Jerry Nairn April 19, 2013 at 3:51 pm |

          Kristen was making generalizations. Any generalization is going to be wrong in specific cases.
          I think we all agree that type 1 is not the same as type 2. But people talk to Kristen as if her child has the same condition as an adult with type 2.
          Assigning descriptive names to two different diseases will not remove all ignorance from everyone all at once.
          But it’s a step in the right direction, for all diabetics.

        3. Rose
          Rose April 19, 2013 at 10:14 pm |

          Kristin, you are displaying the very ignorance you are upset about. I was diagnosed with type 2 diabetes as a teenager. I am also very insulin deficient and have to take 6 shots a day. I in no way want to take away from your child’s experience, but there are better ways to bridge this divide than making gross simplifications.

    3. Lee Ann Thill
      Lee Ann Thill April 19, 2013 at 5:58 pm | | Reply

      It is frustrating. As a 40-year old type 1 who was diagnosed at age 5, I have heard all of the misinformed comments and questions throughout my life. However, I have learned that my frustration doesn’t emerge from the fact that people don’t know or understand. My frustration emerges from the sadness and anger that I have to know and understand to live. It is a subtle, not distinct and important difference. When I address the anger that is about me and my experience rather than look to blame others for being misinformed and uneducated, I find peace, kindness and patience for the people around me who don’t get it. When those people are open to my explanations and efforts to educate, great, and when they aren’t that’s ok too. Dealing with my anger about having to know instead of dwelling on anger that others don’t know has been indescribably liberating.

  31. Bennet
    Bennet April 19, 2013 at 11:54 am | | Reply

    Ok l admit I advocated for a name change in 2007, to, “I don’t need the D-Day Details I only Need Carb Counts for your Menu and Does Anyone Have a Ouija Board so we can Figure Out Why the Insurance Doesn’t Know What is Up With the CGM Because Parents Never Get to Sleepabetes.”

    Maybe I can get some traction for that now.

    (Happy Weeknd, love y’all no matter where y fall on this name stuff.)

  32. DC Scribe
    DC Scribe April 19, 2013 at 11:58 am | | Reply

    Of all the trivial things that bubble up on the DOC, this is the silliest. Who cares what it is called? It is beyond silly and pointless. It’s also damaging because it allows people to dismiss and ignore more important points because the endless whining about a name makes the DOC look juvenile and not worthy of serious attention.

  33. Kelly Rawlings
    Kelly Rawlings April 19, 2013 at 1:09 pm | | Reply

    Is it not TOTALLY AWESOME that we can have this long, involved, respectful discussion of what used to be a very private and lonely condition that we each lived with (or that someone we loved lived with)?

  34. Jerry Nairn
    Jerry Nairn April 19, 2013 at 1:20 pm | | Reply

    Maybe we can get some perspective on this by realizing the discussion is not about renaming, it is about naming different kinds of diabetes. Do you introduce your children as child 1 and child 2?
    Type 1 and type 2 are totally meaningless terms. It doesn’t change the fact that we all have diabetes if we have descriptive names for different kinds of diabetes any more than it changes the fact that cancer survivors are cancer survivors, no matter what kind of cancer they’ve had.
    So what I see is one side that wants descriptive names for specific kinds of diabetes, and another side that doesn’t.
    I agree that it’s a silly thing to raise a fuss about, but I think insisting that we should not name the conditions is silly.

    1. Andrea
      Andrea April 19, 2013 at 4:56 pm | | Reply

      That what I was getting out of it. It’s not about renaming diabetes, just the vague indicators of T1 & T2.

      I honestly don’t understand how this has been interpreted as an “us vs them” situation. If the framers had presented it that way, I could and understand the division.

  35. Jamie Perez
    Jamie Perez April 19, 2013 at 2:46 pm | | Reply

    Again, I would like to thank everyone for the discussion surrounding our petition. In reading through many of these comments, it seems we all agree that efforts should be spent focusing on education and advocacy. That is exactly the focus of our petition. It is about the confusion caused by designating two similar, yet very different, conditions with just a number and how unique names for each type of diabetes that reflect the true nature of each condition will lay the foundation for better education about our diseases. The goal is to benefit all within the diabetes community through increased clarity in education and awareness, which in turn will facilitate better care and more productive fundraising towards better treatment and a cure. Of course, it does not directly benefit progress towards a cure, but it does so in an important indirect way. We believe that clarity in the names is the first step. It won’t happen overnight, but it is a much needed first step. As I mentioned before, diabetes educational campaigns and personal education of others should and will continue, but with the added boost of names that actually mean something. The numbers 1&2 do not.

    The other theme to the comments seems to be the purported ‘divisiveness’ of our cause. The way I see it is that our petition is not divisive. In fact, it is designed to promote unity. I feel it is the blogs and comments that are creating division where there should be none. Our petition does not contain the element of separation present in prior attempts. Times have changed. Circumstances have changed that make the need for these name revisions much more relevant that perhaps 5-10yrs ago.

    The comment I posted above (about the 3rd one) explains in detail why we believe our petition is all about better education and advocacy that facilitates more effective fundraising towards better treatment and a cure for all within the D community. Thanks again for everyone’s consideration.

  36. Meghan
    Meghan April 19, 2013 at 3:32 pm | | Reply

    A lot of the problems people listing here are not going to fix the issue. Changing the name isn’t going to fix that people think diabetes is caused by eating too much sugar (which is a myth no matter what kind of diabetes you have). Diabetics aren’t the only people who have to deal with this problem. Parents of autistic children get stigmatized for giving their children vaccinations, even though it’s a myth that vaccinations cause autism. Not everyone who gets lung cancer smoked cigarettes. Not everyone who looks pregnant is pregnant. This is part of life, and this is not a problem that is unique to diabetics nor fixable with a name change.

  37. Lee Ann Thill
    Lee Ann Thill April 19, 2013 at 5:46 pm | | Reply

    Thanks for adding your voice to this discussion, Amy, and thank you so much for linking back to my post on the issue, and mentioning the points I made.

    As I mentioned in a comment above, in response to someone’s comment, while the petition is not intended to be divisive, it is because these name change initiatives attract people with type 1 and caregivers of children with type 1 who seem bitter and lack empathy for people with type 2. It can be seen in the comments left in support of the petition. In my experience, people with type 1 who are unkind about type 2 are just as “guilty” as the “laypeople” with whom they take issue who are dismissive and operate on inaccurate preconceived notions about diabetes.

    As Scott said, we need to be empathetic of the struggles our fellow diabetics have, regardless of type. We will be better for leaving this name change issue behind, and focusing on acceptance and understanding of each other. When we do that. we will be in a better position to take action that will promote acceptance, understanding and empathy in the public. You reap what you sow.

    1. Pearlsa
      Pearlsa April 20, 2013 at 10:35 am | | Reply

      A few years from now, little Anna is now 19yrs old checking her blood glucose and blousing in the lunchroom.

      Coworker – Oh I did not know you have “you eat yourself sick illness”

      Anna – No I do not….. I have my “immune system attacked illness”

      Coworker – What? My obese uncle Charles has “you eat yourself sick illness” and does the same thing everything he eats too. Anna you are not obese but you could loss a few, you know….

      Anna – Well…..

      Coworker – (cutting Anna off) His legs has been amputated; he cannot see out of one eye it’s just so sad. Good Luck with your “immune system whatever”

      Coworker walks away.


      Adults living with type 1 diabetes, tell me you do not see this happening.

      I am sorry but I think education, education, education is key.

    2. Lee Ann Thill
      Lee Ann Thill April 20, 2013 at 2:34 pm | | Reply

      I would like to clarify that the petition creators have not seemed bitter or without empathy. They clearly feel that changing the name will help everyone, and have been respectful and kind in their pursuit of this. While I disagree with them on the value of changing the names, I do appreciate how they have framed the issue, and how Jamie has respectfully posted responses to those who do not support the petition.

      1. Jerry Nairn
        Jerry Nairn April 20, 2013 at 5:31 pm | | Reply

        A lot of the opinions opposed to giving descriptive terms to the different kinds of diabetes seem to be of the form, “I don’t see the value.” “I don’t think would be all that great.” “I don’t think it’s important.” “It won’t happen all at once.” “It won’t fix problems X, Y, and Z.”

        None of these are reasons not to do it.

        1. Lee Ann Thill
          Lee Ann Thill April 22, 2013 at 1:31 pm |

          There are a growing list of diabetes bloggers who have offered well-considered arguments that are so much more than “I don’t see the value.” Amy’s position is clearly outlined above. She offered the link to my post about it, and my blog post also includes links to some other blog posts. There is plenty of reading out there about the topic if you’re interested in why so many of us disagree with this initiative.

        2. Jerry Nairn
          Jerry Nairn April 22, 2013 at 11:20 pm |

          Lee Ann,
          Most of the arguments against are exactly that, “I don’t see the value.” Your post, saying we haven’t gotten it right yet, and people still use the old terms, was exactly that. You do not see the value, which is what you repeated here.
          Manny’s post says we should not “focus” on this, as if we might drop everything else.
          In Amy’s post here, she tries to summarize both sides.
          I paraphrase.

          The side she favors, she says has these motives:

          - this will create an ever-greater divide between the diabetes types

          Those who see a big divide are not going to change their minds and hearts and become united by keeping the single digit distinction. Those who see the unity will not suddenly become enemies if their conditions have more descriptive names.

          - pushing for a name change is a giant waste of time

          These people don’t see the value in it. Or they have given up before starting.

          - the two types are more similar than not

          The similarities, and the word diabetes, will remain.

          - a name you assign today might be proven to be a misnomer

          If we were not already using misnomers this might be relevant. We do know a lot more about diabetes now than a few years ago. For example, we know that there are more than two types.

          Then Amy listed the points around which she formed her opinion.

          - We need to listen to the veterans in our community

          This, of course, is not an argument for or against the petition. I put my 38.5 years of diabetes on the pro-petition side.

          - Building consensus is a monumental task, and takes a long time

          We have to do hard things sometimes, things that take a long time.

          - We ought to learn from diabetes name-change history, which isn’t pretty

          We haven’t gotten it right yet, but that is not a reason to stop trying.

          - Re-educate the mainstream media? I think not

          No, it would be hard, it would take a long time. But if we do nothing, we deserve what we get.

          - There is a saying that “the road to hell is paved with good intentions.”

          Well, you kind of have to prove that the petition is a “road to hell” for that to be an argument. The road to hell may be paved with good intentions, but the road to heaven is not paved with apathy.

          Amy summarized the side she disagreed with, but with an obvious bias. Here I paraphrase with my bias.

          - We’re needlessly tolerating meaningless titles. It’s time for clarity.

          - This will help create awareness of the real origins and parameters of diabetes

          - We’re not biased against type 2, but type 1 kids are endangered by confusion over “types” of diabetes

  38. Jennifer
    Jennifer April 19, 2013 at 8:36 pm | | Reply

    Hello. I would like to share what I wrote on another forum. Its not what you want to hear, or care to hear. But its what I would like to share. Hope you read it in its entirety. Thank you all. “Hi everyone. I am new to this. My mom was so upset from some of the things she was reading in the many Diabetes support groups/forums she follows that I asked her if I could say something. I am a college sophomore and my little brother who is 12 was diagnosed with Type 1 Diabetes 5 years ago. He was 7. It was on a holiday. He fainted and my parents took him to the Pediatrician ( maybe some of you can relate back to that day being diagnosed with your Diabetes). He was hospitalized for a week for being Diagnosed as a Type 1 Diabetic. My family got a crash course in the hospital for an entire week on how to manage his disease. I think this is pretty standard. He has lost consciousness from severe lows 4 times in 5 years. Only one skull fracture (thankfully). Most times he can, but sometimes he cant eat at his own will like his friends do when hes with them because it would require a needle in his arm leg butt or stomach. And he gets embarrassed or just doesn’t want the shot. But he is learning the trade off is yummy food He was so happy when he learned how to give his own shots ( 8 – 10 times a day), still. He cant always sit at the lunch table with friends because he is in the nurses office everyday telling them his carb count, getting insulin , checking for ketones calling mom and then his lunch seat is taken. So he has to find another. He never complains. He cant go to sleepovers yet because my Mom is too scared he will sleep through one of his many low blood sugars she awakens him for in the middle of the night to get juice or tablets in his mouth while trying to keep him awake and alert enough just to get his number up to over 100. So she can sleep a few more hours. And no he never complains. Never. He cant feel his fingertips anymore from calluses and he is not even 13. He never has complained about it though. He is afraid of the insulin pump, all the tubing and looking so different from his friends. But we will get there because he is running some really high numbers lately (200 to 300) despite everything my mom and dad do. All the extra injections of insulin to correct his high and bring it down haven’t been working lately. We don’t talk about his disease much with friends or family. They think he looks great, so he must be doing great at “Watching what he eats.” If they only knew thats 1/10th of eat. He can eat anything as long as he injects after each time theres carboydrates involved, his pancreas has shut down forever for insulin production. They don’t understand the amount of care he needs from Mom and Dad every single day of his life. Not many understand others disease or disease classifications. wish we could all fix that. We have to bring our own rolls when we go to sports games so we know the carbs, otherwise we have to guess. Have you ever tried to guess with a little kid how much insulin to give knowing 6 units may not be enough and 8 units may drop him to 30? And then of course, theres the big guns, lantus he gets that shot every night. up to 16 units now. That keeps him steady or like a basal rate. So yeah, its the little things that make up the big differences between these two diseases. I would say lots and lots of little life saving things that parents of little kids take to heart every single day. My grandpa is now a type 2 diabetic. He cried, he was afraid his life would be like his grandsons. Yes they both have “Diabetes” , but what grandpa has to endure day to day is much different than what my brother has to endure,. His Diabetes its a very, very different disease to manage. but in the end all the same complications can occur. When my mom told me about the petition to revise the name, my brother said, I dont so much mind the name, but man it would be nice if it was a name that made sense to everyone. Thats all I needed to hear. I have since gotten over 100 college friends (some diabetics too) to sign and support this cause. Anything to help bring awareness. Its allowed me to explain the most about Diabetes than evr before and the petition has taught others at least something new already. Can I ask a favor, can you all take a step back and really look at this document for what it is. Its a name revision petition inspired by the children and adults in the diabetes community who can stand to benefit from having their particular Diabetes disease name better reflect the nature of their disease. Most important are the children in the diabetes community whose safety and livelihood depend on the knowledge and understanding of their caretakers, schools, sports field, friends, strangers etc. (no matter their type). This petition starts that process on the most basic of levels. So much more will be needed. And then there are the adults (no matter what their type) who are deserving of having a name revision as well. This petition starts that process on the most basic of levels. So much more will be needed. I cant imagine what will happen for the next step it will take to begin to get us all out of the Diabetes Cave. ( Im in it too as a sibling of a T1D and granddaughter of a T2D.). Im saddened by the Diabetes Community “family” members who arent able to look toward the future generations. We have the chance to make changes for them, for all. I support this first and foremost for my brother who got the short end of the stick with a a number for disease name and much confusion from the present ” awareness” out there (I mean lack of for his type). Btw, Type 2′s are in the same boat, such stigma attached? Why??But it doesn’t always have to be that way. I support every adult and child who deserves their type of diabetes to have real name classification /clarity. I think most all other forms do, MODY LADA Gestational Monogenic and others.The Diabetes Community could really be a force to be reckoned with in support of Diabetes …changes, awareness, growth, education, fundraising. But what a poor example many are setting for the children in this community. They matter. WE ALL MATTER. In the end, we only have ourselves to blame for not moving forward in the world…together… taking baby steps…together. My little brother and I were taught to help others. But I dont know how to explain to him that his “diabetes family” doesnt want to help with his disease name clarity. How will they ever want to help/support him with the much bigger and greater issues that remain. Its ok if you just think about my thoughts. No need to respond. I really wanted to give her some support and I’ve asked her for other websites and articles that are against this petition. Im finding most of the opposition is in Diabetes sites though. I hope the name revision goes far, even if only to bring more education and awareness for all Diabetics,like it has done for me here, or my friends, it will have been a successful cause that added to many causes that are desperately waiting for Diabetes Advocates to explore. Lastly, I was able to fix a few typos from my last post at another site, and add a few more thoughts. My brother was in 3rd grade when he told the GYM teacher he felt low, the gym teacher said, oh thats right you have diabetes, ok go lay down on the mat until you feel better. My brother cried and said my mom told me to always go to the nurse. So the example of on the sports fields and in caregiving situations these saying I have Diabetes just doesnt cut it anymore for the D children in the world anymore. Start with name revision clarification for 2 of the family types in your Diabetes World. (T1& T2) Then get to work on everything else on the long checklist. Dont forget the T1 & T2 chldren, kids, and teens who dont have your years of experience living with the confusion. PLEASE. Thank you.

  39. Jennifer
    Jennifer April 19, 2013 at 9:01 pm | | Reply

    LeeAnn, As you say above, you may be better off leaving this name change issue behind, but Im sorry I cannot begin to agree with you that my little brother or any other child or new children diagnosed will be better off leaving it behind. You would actually be better off starting from ground zero and then do what the Petitioners set out to do from the beginning of their petition, name revisios for just two of the yypes and then taking action promoting acceptance understanding and empathy in the public. They will reap what they sow. Thankfully we all will. I dont know a single Type 1 Diabetic child who is unkind about type 2, and almost every Type 1 that weve ever met in the real world (and Type 2 for that matter) really do have and show compassion. With all due respect, your comments above are dismissive and operative on inaccurate preconceived notions not only about diabetes but the “laypeople” who arent “guilty” but just confused, like so many non diabetics and diabetics too. For 20 years I have lived my life without any bitterness or lack of empathy for anyone in the Diabetes world. Especially because I know what my brother has to go through. But reading your posts I am only left with a feeling that you have missed the boat on this one, because the petition, its supporters and many Diabetics out there in the real world represent a change for the better for two types and then changes for all types. The fact you dont see the comments in the petition or read them as a desperate plea for help to end the confusion for them, for all, is what concerns me the most. Especially for the children, who by the way, have only their parents to be their voice.

  40. Jerry Nairn
    Jerry Nairn April 19, 2013 at 11:28 pm | | Reply

    I propose that we end the division by just using one word for all of these conditions. Diabetes covers it all. You are free to disagree if you are in favor of dividing our community needlessly.

  41. The Kerfuffle Over New Names for Type 1 and Typ...

    [...]   [...]

  42. Jacq
    Jacq April 20, 2013 at 4:00 am | | Reply

    I very rarely comment on blogs but I do feel like I should say something here, My name is jacq and I run diabetics with eating disorders, a registered charity in the UK focussed on raising awareness of eating disorders within type 1 diabetes , including diabulimia. I recently did a study with our members that showed over 40% of our members had been bullied because of the label ‘Diabetes’ and that was a major contributory factor in the development of their Eating disorder, JDRF also released a study recently showing that Type 1 Kids are being bullied because of misconceptions about Diabetes. That alone I think is justification for a name change, personally it doesn’t bother me, but then I am big enough and ugly enough to stand up for myself and educate anyone who gets in my way. I understand that their is a genetic component and possibly an autoimmune component in Type 2 but exactly the same can be said for gluten intolerance, it’s still not celiacs, there is a huge difference. I don’t think that we should be expecting children to have to explain the differences, we are their advocates, it’s up to us and for that reason I will be supporting the petition and name change (even though that would cause my organisation a branding problem ha). We are all adults, we can choose not to be victimised, far too often children can not. Unfortunately in my line of work I see the end result of this every day, very psychologically and physically damaged young adults with complications that you shouldn’t see untill 3 – 4 decades of diabetes. Anything I can do to try and prevent this in the future, however small, even though this only may be a tiny factor for some, I will do. And I urge you to do the same and sign the petition.

  43. Sarah Howard
    Sarah Howard April 20, 2013 at 5:34 am | | Reply

    There are a lot of possible causes of diabetes of any type, and we don’t know what they all are. Arsenic exposure can cause “type 2″ diabetes in places like Bangladesh (where diet is not a likely cause)– but arsenic-induced diabetes is not caused by insulin resistance or autoimmunity– it is probably the direct effect of arsenic on beta cells. Really, we don’t know why people get type 1 or type 2– some people who are overweight etc never get type 2 for example and we don’t know why not– and we can’t always assume that type 2 is caused by diet or type 1 is always autoimmune (type 1b diabetes is type 1 without autoimmunity). There is no clear dividing line between diabetes types– it is more of a spectrum. I think type 1s should not assume that type 2s brought it on themselves– that is part of the stigma that we need to remove for *all* people with diabetes.

    1. Jacq
      Jacq April 21, 2013 at 3:29 am | | Reply

      I agree but regardless of causation net result is the same – type 1 children, emphasis on CHILDREN, are being victimised

  44. riva
    riva April 20, 2013 at 6:21 am | | Reply

    Name changes alone do little, education must always accompany them for the media and public both are confused, as are many patients themselves. Will separating type 1 from type 2 hurt or help funding? That is one key issue as is PWDs feeling seen and understood.

    Unfortunately, no public effort seems to ever have been done like a PSA. Remember the Ricki Lake t1 blunder?

    1. Jamie Perez
      Jamie Perez April 20, 2013 at 8:43 am | | Reply

      Riva, those are very good points. We absolutely believe that a name revision would need to be followed by a media campaign to educate and bring awareness. This is where we all need to come together to make this happen. It is such a benefit to us all. It may take time, but we have time and keeping things status quo is getting us nowhere.

      And I believe this will greatly benefit fundraising for diabetes as a whole. One of the comments we received on our petition was from a long time member of the JDRF Summit that appears before Congress to ask for funding. He said this change is much needed. Every year they waste valuable time – 30 minutes or more explaining diabetes in general and the differences between T1 and T2- time that could have been better spent making the case for more funding. We believe that a name revision that does not remove either T1 or T2 from the disease classification of diabetes, but clarifies the type more descriptively, will benefit progress towards better treatment and a cure. Of course, it is not a direct benefit, but an important indirect one. We believe it will facilitate better education and awareness, and that in turn will greatly benefit fundraising. I do not believe that we would have gained the support of respected individuals within the D community like Dr. Camillo Ricordi of the DRI if that wasn’t the case. Dr. Ricordi left this comment when signing our petition:

      Camillo Ricordi MIAMI, FL
      “The confusion generated by the same name for two completely different conditions has been a problem for decades … time for a change (at least in the name)”

  45. Jamie Perez
    Jamie Perez April 20, 2013 at 6:56 am | | Reply

    I can not comment about prior petitions, but we were motivated by an undying love for our children, a desire to pave the way for a better life for them, and an extreme amount of empathy for all those living with diabetes of any type. I realize that many have been around the DOC for much longer than we have and have seen things like this before, but surely this can be looked at without a prejudiced eye. This petition IS different- very different. It is not divisive- it is truly about benefiting ALL types of diabetes. T1 and T2 are the only two that don’t have a real name. We just want names that indicate something about the disease so that the name itself will lay the foundation for better education and awareness, which in turn will facilitate fundraising towards better treatment and a cure for ALL types of D. Names are important. Names can be indicative and suggestive for the thing named. To me, it is irrelevant if the names have been changed before. Is that a reason to stay with names that mean nothing and do nothing to aid in education and awareness? This is a perfect time to unify- to unite behind names that aid the education process and to come together to move forward with these new names and campaign for true education and awareness- for all types of D.

    It has been stated a few times that the comments left on my petition show a lack of empathy. There are literally 1,000′s of comments left and they are a heart-warming testament to how much this means to so many. Are there comments that show a lack if empathy? I’m sure there are, but isn’t it possible that some of those are just a small tidbit of their thoughts? Those comments are 1-2 sentences in most cases. You do not know what they feel about T2′s themselves. Just because someone doesn’t like the stigma surrounding T2 to be attached to them, doesn’t mean they have any type of negative feelings towards T2′s themselves. I can not imagine that T2′s like the stigma and our petition is motivated by that as well. None-the-less, shouldn’t the petition be judged for what it is, what it says and what is proposes to do? I would think that a decision based on that would have validity- whether it is for or against. However, making a decision about something based on the purported motivation of those who are supporting it- not the ones who created it, but the assumed reason that others are motivated to sign it- well, that seems bitter and lacking in empathy to me.

  46. Andrea
    Andrea April 20, 2013 at 7:13 am | | Reply

    Apologies in advance for the length of this.

    I truly understand how the comments can be hurtful. Sadly it is one of the downfalls of the semi anonymous nature of the internet. But that doesn’t mean that it is the majority opinion of those supporting an indicator change. I don’t intend to change your mind, I’m not vain enough to think that my opinion is the right one. In all honesty, I teeter on the line of not sure it will work, but what could it hurt to give it a try and I wonder if good could actually come from a clearer indicator. True, we are all in the same family of diabetes and yes, unity is important and should be encouraged by support for all without judgment. No one should ever feel guilt of a diagnosis, especially those who living with T2. Someone (forgive me for not digging for who) brought up a wonderful example of how lung cancer used to be associated with only smokers. Dana Reeve made public her diagnosis and put a face out to show that was not always the case. I hope in the same way, the stigma associated with diabetes will be removed, it’s unjust and unfair.

    I’ve read the arguments that you can’t change public opinion. They’re not going to listen or care if it doesn’t directly affect them. And in this respect, when reading this particular blog article, one of the points made was “We need to listen to the veterans in our community“. That one sentence stung me. While I know it wasn’t stated to inject hurt into the reader, as a “quiet” advocate I felt dismissed. Sure I’ve only been at this (as a parent) for 5 years, which seems a small fraction compared those of you who have lived with this for decades. But I am so thankful that generations before me didn’t listen to veterans in their communities. I am so thankful that, as a woman, I am able to vote or that I was able to marry my half Asian husband without fear of death. I am so glad that when we had a new dx in our household and I asked the military diabetes yahoo group where I was a member, if anything had been done about the care of and glucagon administration to diabetic children in the child/school care facilities, that I didn’t listen to them when I was told that it was a pointless battle because you can’t change or challenge the Army. I’m so glad I didn’t listen to those veterans in my community. I’m also thankful that I fought military health insurance when they initially denied a cgms for my daughter. By appealing and fighting them, the policy was reviewed and changed to benefit others that follow.

    I recently read a blogger (sorry again for not digging to give credit) who used a bicycle analogy. I thought it was brilliant. Not that I’m fluent in bicycling, but I know enough not to take a racing bike up into the rugged hills. I think this is the same as treatment differences. Especially when there are insurance limitations in supplies, especially test strips. Of course, I’d love to see these limitations removed for all but I worry for those who are limited to 200 strips per month for their children. We personally test on average 10 times a day, sometimes more and sometimes less. Many of those limited to the 200 per month are on state insurance due to financial qualification. If the state determines that they are currently under a financial hardship, how are they supposed to be able to afford to supplement their true needs? Many of these limits are established based on the standards for the care of most T2s. Of course, we all know that some insurance companies are just jerks and they don’t care if the ADA updates their standards of care manual. While it may not be important to those outside of the sport what kind of bike I am riding, I think it does make a difference to ensure that I have the best equipment for my terrain.

    I know many say we have a name, it’s diabetes. Yes, but I think of it like my last name, a family name. I’m so thankful that my parents didn’t throw their hands up in frustration and just name me Child 1 or my brother Child 2 because they couldn’t decide or come to an agreement on a name. In that, I can kind of see the quest for identity. I completely understand what there is so much still left to learn about diabetes and it would make it difficult to give it an accurate name with physiology. The unknown why of ALS (Lou Gehrig’s disease) wasn’t known for many years after it gained identity.

    I know I won’t change minds or opinions about the petition. But I do ask, in the name of unity, that I not be lumped in with the haters or dismissed, just because I am the parent of a child with type 1 or not veteran enough. Who knows, maybe those in charge of labeling will relook the etymology and decide it’s time to revise. If this happens, or even if it doesn’t, I do wish nothing but continued unity in progress of education and removing stigmas.

    I’d also love to see the power of the DOC work to take on insurance limitations of supplies, no one should be limited in the care they need and I’d also love it if we could take on each and every book/publication/website/”provider” who touts that they can “cure” diabetes. I promise you this, if I ever win the lottery, I’m hiring a lawyer specifically to take on this challenge for us all ;)

    1. Jerry Nairn
      Jerry Nairn April 20, 2013 at 4:59 pm | | Reply

      I thought the line, “We need to listen to the veterans in our community”, one of the highlighted reasons for opposing the petition, was silly. It was really a single anecdote. It was really a recommendation to listen to people who shared her opinion.
      I’ve had diabetes longer than the single “veteran” mentioned in that paragraph, and I support the petition.
      Many other longtime diabetics see the value in giving descriptive names to these conditions.
      There is no consensus against it.
      There are more than two kinds of diabetes.
      Type 1 or Type 2 is meaningless.
      It does not divide us to say we have differences. There are men, women, “veterans”, newcomers, parents, caregivers, … we’re different. That does not change what we share to say that we have differences.
      The fact that one act will not solve all problems has never been relevant as to whether that act was worthwhile. We would never do anything if it was.

      I have yet to see one valid reason not to use descriptive terms for different kinds of diabetes.

  47. Mary Dexter
    Mary Dexter April 20, 2013 at 8:58 pm | | Reply

    First, I want to thank Amy for allowing us to continue discussing this topic.
    We need to get rid of the stigma and the stereotypes.
    We need to have more accurate diagnoses the first time around..
    If we need test strips, we should be able to get them.
    If we can’t produce enough insulin, we need to be able to get that, too.
    I wish we could jettison the red herring of diabesity. Either prove conclusively that it Always precedes damaged mitochondria rather than that damaged mitochondria or other factors lead to an inability to metabolize efficiently. In other words, look at what exactly are the causes, rather than “linking” things that “accompany” Just cause I’m carrying an umbrella doesn’t mean I made it rain.
    And we don’t need two kinds of diabetes: those who should be bullied and … No one should be bullied.

    1. Jacq
      Jacq April 21, 2013 at 3:48 am | | Reply

      I wasn’t saying that anyone should be bullied ever, what I am saying is that adults we CAN stand up for ourselves and in many situations children can not and at DWED we see the end result of this, which is by the way truly horrific. Once you’ve seen a 24 year old on deaths door refuse a pancreas transplant because ‘how will I manipulate my weight?’ perhaps your opinion would change. As a society we have a duty to protect our vulnerable and please let me assure you that the current misconceptions surrounding the name diabetes is having a disastrous effect on the mental and physical health of our type 1 youth. I did research into this recently for my dissertation and 76% of the 100 Type 1 Diabetics who also have eating disorders including diabulimia, responded that they ‘strongly agreed’ that the negative portrayal of type 2 diabetes contributed to the development of their eating disorder, what is the answer, separate them. Take that element out of the equation. The other day a girl in my group who has desperately been trying to recover was told ‘well I can see why you got diabetes’ and It’s sent her into a total tail spin. I totally agree that your should be wider education on T2 but in the meantime my lot are suffering serious ramifications from the ignorance, and often they are still very mentally vulnerable also. Some of the rubbish they have had to out up with from ward nurses or Eating Disorder specialists is also beggars belief, I was in parliament the other week trying to explain the differences and why we need specialist services for Diabulimia, trying to explain the differences between T1 and T2 takes up at least 30 % of my time which really should be spent advocating for my members. A name change would really help with that

      1. Natalie Sera
        Natalie Sera April 21, 2013 at 10:37 am | | Reply

        Hi, Jacq! You already know that I’m struggling with an eating disorder — might as well let the rest of the world know about it.

        I have a couple of reactions to your note above. First, I would put women with diabulimia in the same category as women without diabetes who have eating disorders. The fact that they self-harm in a different way doesn’t mean that they don’t have the same issues as those without diabetes. Diabulimia is a very complicated and serious issue, but I think it’s mostly tied up with the general low self-esteem and body dysmorphia seen in the ED population in general.

        Second, I DO think there is a problem with the judgmentalism, bullying and stigma attached to T2, but that is an issue that needs to be addressed by the whole diabetes activist community. Some people with T1 will also have a heavier body and an apple shape, and some T2s do not, but the point is that we have blithely allowed the obese to be discriminated against, and without regard to diabetes. The vast majority of women with ED are nowhere near obese, but if your body is genetically programmed to be round, there is nothing you can do about it, whether you have T1, T2 or neither. The stigma against anything but a thin body shape is taking its toll on a lot more people than just T1s with eating disorders. One CDE I talked with said that she thinks that eating disorders are very common in T2s as well, but nobody recognizes or talks about it.

        So I totally agree with you that we need to protect our vulnerable; I just see it as a different group than you do.

        1. Jacq
          Jacq April 21, 2013 at 12:15 pm |

          Hi Natalie,

          I don’t know if you responded to my call for research participants, if you did, massive thanks. When I did my research I found that there were 5 main factors that contributed to the development of an ED among T1s, the third biggest factor was general ed indicators, such as low self esteem and body dysmorphia with no diabetic aspects, suggesting that there is a proportion of us who fall into diabulimia in the same way a non diabetic would develop an ED. However, The single biggest contributory factor was high levels of perfectionism combined with high levels of diabetes specific distress, all other 3 factors were diabetes related also. So to say that women with diabulimia are the same as the non Diabetic ED populations is inaccurate, in fact this is problematic and indicative of the wider problems surrounding diabulimia among the medical profession, if we can’t get them to realise that at least for the majority of sufferers, it has it’s own mechanisms and underlying causes ( i.e. hypophobia) then treatment will ALWAYS fail. The research I have conducted is currently being used by The Institute of Psychiatry because it does show this significant difference. I understand where you are coming from, personally I run DWED because I don’t want anyone to ever go through what I went through and because the DA group gave me my life back. I guess for me I am happy to pick my battles and a name change would make my job a lot easier

  48. Mary Dexter
    Mary Dexter April 21, 2013 at 9:58 am | | Reply

    I read the proposal. A few comments:
    1. I know this is picky, but who’s = who is; whose is the possessive.
    2. Each of us is the voice to the public. We need to keep explaining, making certain we have our facts.
    3. 2nd sentence is what is causing readers to view this as divisive.
    4. I did appreciate your calling attention to the false claims of reversing or curing any kind of diabetes. Mendacity.Also the misinformed caretakers are scary.
    5. Research is saying the beta cells may not die, but just go into hiding.
    6. I had to look up Apoptosis.
    7. I always describe myself as LADA, then explain how the biology of diabetes works. So much is being dumped into Type 2 that I agree the term should be jettisoned. Perhaps Rapid-onset Autoimmune Diabetes and Gradual-onset Diabetes with Insulin Resistance might be clearer.


  49. Mary Dexter
    Mary Dexter April 21, 2013 at 10:24 am | | Reply

    After reading the petition, I have a suggestion. Apoptosis is just going to baffle even more people. I had to look it up. Also, research is showing that the beta cells may not be dead, as previously thought, but merely hiding. What about Rapid-Onset Autoimmune Diabetes and Gradual-onset Diabetes with Insulin Resistance? or Progressing Insulin-resistant Diabetes?

    Also who’s =who is; whose is the possessive. 2nd sentence is probable cause of much of the kerfluffle.

    1. Natalie Sera
      Natalie Sera April 21, 2013 at 12:11 pm | | Reply

      And then there’s gradual onset with autoimmunity, and rapid onset without autoimmunity, and gradual onset without insulin resistance, and stiff man syndrome, and a lot of other types. Sounds like you’re advocating a vegetable soup in which no one will be able to identify ANY of the ingredients. If we stopped looking at this as T1 children and T2 adults, and realized that it has a common basic defect — the inability to regulate BGs, then we could be united as a much stronger and more numerous community.

      1. Jerry Nairn
        Jerry Nairn April 21, 2013 at 1:23 pm | | Reply

        It is a vegetable soup of many different kinds of diabetes. Prpblems arise from people thinking they know what diabetes means. It is not all the same. We need to make distinctions where appropriate.

  50. Natalie Sera
    Natalie Sera April 21, 2013 at 6:38 pm | | Reply

    So, Jerry, the first thing is where are the distinctions appropriate? You’d probably get more opinions than there are people in the discussion! :-) (Old Jewish proverb: when you have ten Jews in a room, you have eleven opinions!)

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