Type 1 vs. Type 2 and Other Diabetes Confusion

When the Powers That Be established National Diabetes Awareness Month, I’m guessing they had the millions of at-risk and yet-undiagnosed Type 2s in this country in mind. That’s an estimated 6.2 million people in the latter category alone. And then of course, there’s the public at large: How aware are they of truth vs. myth about this pervasive disease? For a condition that effects 7% of the American population, it’s just astonishing how much misinformation is afloat.

Of course it begins with the whole Type 1 versus Type 2 issue. Despite the cursory explanation offered on most web sites and other official sources, how many people do you know personally who can really explain the difference?

Last week, a reader here posed a contentious question: Is it possible that the World Diabetes Day campaign this month does Type 1 diabetics “a disservice by lumping them in with Type 2′s?” The commenter adds: “God only knows how many mothers of children with Type 1 get blamed every day for ‘causing their child to get diabetes.’”

You can’t help wondering if she might have a point.

Otherwise, why would the JDRF be investing a chunk of its awareness campaign dollars this year into creating a “series of materials” to educate the public about the difference between Type 1 and Type 2? (This according to the group’s VP of Strategic Communications, William Ahearn). The JDRF’s stated mission is to “find a cure for diabetes and its complications through the support of research.” In the interim, they’re looking to improve the lives of PWDs — presumably primarily Type 1s — and public confusion about the two types of diabetes ain’t makin’ our lives any easier, is it now?

Halle_berry_please_shut_up

What the heck is Halle Berry thinking, btw, broadcasting such a load of crap about “weaning” herself off insulin? Check out this little ditty in an Irish publication over the weekend:

“The actress was diagnosed with Type 1 diabetes after she passed out while shooting a TV show called ‘Living Dolls’ when she first arrived in Hollywood. But the disease has now dropped to Type 2 diabetes because Berry is no longer ‘insulin dependent.’ She says, ‘I’ve managed to wean myself off insulin, so now I like to put myself in the Type 2 category.’” WtF? I hope the JDRF bombards her with campaign materials. See Kassie’s Open Letter imploring Berry “not to discuss her pancreas with the press.” Thanks, Kassie. Geezus.

Meanwhile, is the gargantuan World Diabetes Day campaign contributing to the Type-2-heavy view of “the diabetes burden” around the world? Probably. But hopefully it’s still doing more good than harm. We are, after all, all up against a common enemy: complications and death. Ugh. If lighting up over 100 iconic buildings around the world in blue on Nov.14 lights up enough hearts and minds to save a few hundreds of lives at least, I’m all for it.

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In a related bulletin, new JDRF-backed research has discovered that some children diagnosed with Type 1 diabetes under the age of 6 months don’t have diabetes at all. Instead, they may have a rare genetic mutation that mirrors Type 1 diabetes — a form of monogenic diabetes. This can be detected through a simple blood test, and treated with simple oral medications. Ahearn says the JDRF is “very cautious” about creating false hope among parents, but if your child was diagnosed at 6 months or younger, find out about getting tested HERE.

 

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21 Responses

  1. Jenny
    Jenny November 5, 2007 at 7:25 am | | Reply

    Actually, a Daily Mirror news story from 2005 reported that Berry was diagnosed as Type 2.

    But her story illustrates the fact that there are many more of us than realized who have Non-type 1/Non-type 2 diabetes that gets misdiagnosed.

    There are at least 6 forms of monogenic diabetes all of which are misdiagnosed as Type 2 or Type 1, and researchers suspect there are dozens more that haven’t been discovered yet.

    I have one myself, though I had to suffer through years of poor medical treatment thanks to a misdiagnosis of Type 2.

    The more studies of genes contributing to diabetes, the more it will become apparent that the idea that “Type 2 is caused by obesity and characterized by insulin resistance and high levels of insulin production” will be revealed to be an old wives tale.

    It is NOT supported by the data, already, though the media keep repeating it.

  2. Michelle
    Michelle November 5, 2007 at 7:33 am | | Reply

    Thanks for bringing this up Amy. I think every blogger everywhere has said and felt these frustrations – the first with the media in not doing a better job with the type1 and type2 issue (and yes, parents seem to get all sorts of bad comments about it – it’s almost like it’s ok for people to say nasty remarks about our kids) and second for taking on the Halle Berry issue. Even Perez Hilton got it right. http://perezhilton.com/?p=8119
    Why can uber trashy gossip guy get it right and not mainstream media?

    Halle needs to just keep her mouth closed.

  3. MoHo
    MoHo November 5, 2007 at 9:16 am | | Reply

    I think Miz Berry is full of crap, if she is a T2 I am Superman. I bet she has a team of endos working with instant-death confidetiality contracts, there is just no way her story could be legit. She should keep her GD mouth shut. The truth about her health won’t come out until her career wanes and she needs more attention, then the high priced hardcover will be released.
    In terms of awareness, nobody will care about T1/T2 until their lives are directly affected, until then they will just continue to be ignorant a-holes that make terrible comments and assume the wrong things.

  4. bennet
    bennet November 5, 2007 at 10:13 am | | Reply

    Bill at JDRF is great.

    He was very kind helping me to understand the JDRF IDDP program. He was even funny about it.

    http://ydmv.blogspot.com/2007/10/apparently-somebody-does-know-how-this.html

    Maybe we should focus our energy on the people who help and not that Hollywood doesn’t.

    What would we rather have real people working hard for cures or high profile celebs reflecting their lime light?

    I’ll take Bill & co.

    I probably shouldn’t have called him a geek but it seemed funny at the time. The T1 community needs a laugh now and then too.

  5. RichW
    RichW November 5, 2007 at 10:27 am | | Reply

    Ignorance is bliss a there’s a lot of happy people in Hollywood.

  6. Chris
    Chris November 5, 2007 at 10:44 am | | Reply

    As the previous poster mentioned, there is more than just Type I/Type II out there.

    Here’s a story for all of you who are so hard on Haille and what she “knows” about her diabetes. I was diagnosed with diabetes at age 13 in 1982. At the time, Type I was Juvenile Onset and Type II was Adult Onset. Of course I was put on insulin and my parents were told about the honeymoon period, etc. In 1995, my husband and I started discussing a family and we went to a specialist at Northwestern University. I was given a test whereby glucose was pumped into my body via an IV and my blood was drawn to measure glucose levels among other things. During that test it was determined that I WAS producing insulin. Guess what! I can do just fine on oral meds. Turns out I have a fairly uncommon form of the disease – which the specialist guessed at given my family history. Both my father and grandmother were tall and thin and developed insulin resistance in their 20’s. So, while I have no idea about Haille Berry’s situation, I can tell you that it is possible to go from being an insulin dependent Type I to a non-insulin dependent Type II. Not because I was cured, but because I was mis-diagnosed. You may think Haille is a fool but maybe she knows something about this disease/her disease that you do not. Maybe she doesn’t talk to the public about it for EXACTLY the reasons you are all up in arms about – she doesn’t want to mislead or misinform.

    I still struggle with the question “Do you have Type I or Type II?” The answer, according to my doctor is that I probably have MODY – Maturity Onset Diabetes of the Young.

    Here is a bit of info about MODY.

    Maturity Onset Diabetes of the Young (MODY) is a group of diabetes disorders that affects about 2% of people with diabetes. MODY is often not recognized and people may be treated as Type 1 or Type 2 diabetes by their doctors. MODY has four main characteristics:
    1. Diabetes presents at a young age, usually less than 25 years of age.
    2. MODY runs in families through several generations. A parent with MODY has a 50% chance of passing on MODY to their child. This is called autosomal dominant inheritance.
    3. People with MODY do not always need insulin treatment and can often be treated with diabetes pills or meal planning alone.
    4. People with MODY do not produce enough insulin; this is different to Type 2 diabetes where people frequently produce lots of insulin but don’t respond to their insulin.

  7. Karen
    Karen November 5, 2007 at 2:31 pm | | Reply

    Amy! I LOVE YOU! I was wondering if you would mention this situation. I agree that diabetes is confusing. I have leared a lot about type I and type II and know a little about MODY and have learned some info about the genetic mutation that some children have espeically those diagnosed before 6 months of age. However, I have LEARNED this…WHY? Because I have the disease! I want to know more about it. I want to understand it and perhaps learn how to educate myself and to help educate others. I think others should do this as well. Knowledge is power and more so with this disease. NOW…Halle Berry probably has access to the best Endo’s in the world, the best medical care…however, she doesn’t know what type of diabetes she has? This is NOT acceptable to me. Give me a break!!! It really just stuns me that she would not want to learn more about it. I mean…seriously people. Okay, that’s my soap box for today!

  8. Sarah
    Sarah November 5, 2007 at 4:33 pm | | Reply

    Thanks Amy for responding to my comment. I think it raises important issues, and the recent confusion with Halle Berry is an example why this needs to be addressed.

    The problem is simply educating people that (attn Chris):

    Type 1 diabetes=Insulin dependent
    Type 2 diabetes=Non-insulin dependent diabetes

    IS NOT CORRECT.

    People are confusing the treatment of their disease with its pathology. And yes, there is a huge medical issue with that.

    Type 1 diabetes: An autoimmune disease.
    Idiopathic Diabetes(sometimes wrongly called Type 1B): Found in blacks, the need for insulin comes and goes.
    MODY, KIR6 mutation, etc.: Rare monogentic forms of diabetes that may be *treated* like Type 1 or Type 2, but is obviously NOT either of these diseases.
    Type 2 diabetes: Insulin resistance. This is the most common form of diabetes, and is linked directly to obesity.

    A Type 2 diabetic or person with MODY may need to use insulin, but they ARE NOT a Type 1 diabetic. How can MODY or insulin resistance change into autoimmunity? It can’t. Totally different diseases with different genes and causes.

    It’s not rocket science, but yet people are still confused about the 2 main types of diabetes, which are still the most common types.

    I don’t expect people to understand MODY, but I DO expect them to understand T1 vs. T2.

    How many kids and babies have to die because their parents think “diabetes” only happens to “inactive, fat and old” people? How many of those who develop Type 1 as adults are misdiagnosed as T2 and have to slip into a coma before a doctor realizes? There is no education out there about Type 1, and people are dying, and the world is ignorant.

    Likely no one with MODY or KIR6 monogenic diabetes will die if they take insulin instead of pills for a few years (provided they don’t experience severe hypoglycemia). I wish I could say the same for a Type 1 diabetic misdiagnosed as a Type 2. s

    A cure for Type 1′s will never be found if people keep telling the parents of Type 1 children that they somehow brought the disease on themselves. Or someone may try and convince the mother of a 5 year old Type 1 that a “raw food” or vegan diet will cure the child, and tell them to stop insulin treatment. Ignorance is not bliss, it is dangerous and potentially deadly.

    So again, I ask, are Type 1 diabetics experiencing a disservice being lumped in together with Type 2 diabetes? I believe so 100%. More so, this ignorance is dangerous.

    I think this whole campaign is poorly planned, and overall a bad idea in its current state. This campaign is using Type 1 diabetics to promote “diabetes awareness” for an entirely different disease, in which the focus is prevention (Type 2). ??? Why add to the confusion?

  9. Sarah
    Sarah November 5, 2007 at 4:41 pm | | Reply

    Sorry Chris, I realized you were saying you only went from “Type 1 to Type 2″ because you were *misdiagnosed”. That would be a correct way to look at it.

    But do you not agree that what Halle is saying is dangerous? She should state that she was misdiagnosed, not that she “downgraded” her diabetes. That is medically impossible, unless her doctor is using classification terms from 1960. Medically, she is factually incorrect and obviously does not know what type of diabetes she has. Perhaps she said this for publicity? She can’t be THAT dumb, could she….?

  10. Chris
    Chris November 5, 2007 at 4:49 pm | | Reply

    Karen,
    My guess is that HB was TOLD what type of diabetes she had. She passed out on the set, her sugar was 400+, she was thin and otherwise healthy. Must be Type I. I think I read that she was diagnosed about 16 years ago. So approximately the same time I was learning that I was producing insulin. At that time no one was using the term MODY. My case was one of the first studied in depth where a juv was still producing insulin. My guess is that when HB decided to have a child, she went to some big gun endos and they told her she wasn’t type I.
    She may have been very educated about diabetes and taking excellent care of herself, but why would any type I assume that they might be able to go off insulin. As PP have stated, that is lunacy.
    I feel sorry for the attacks she is facing. I was belittled by many endos when I complained of constand hypos and wondered if I could try oral drugs and even stopped taking my insulin in college for a time. No one could accept that someone diagnosed as a kid could be non-insulin dependent. Don’t blame the patient. HB could have been very proactivly learning about diabetes and never come across MODY. The poor woman does not put herself out there as a champion of the disease and now she is being vilified for one simple quote, which may actually be TRUE for her. It was true for me. Again, not because I was cured – and HB does not say she found a cure.

  11. Chris
    Chris November 5, 2007 at 4:55 pm | | Reply

    Amy,
    Please let me add that maybe with your access you can interview HB and find out what is behind her confusing quote. Perhaps it is legit not a “wtf”. Maybe there are some other MODY’s out there who are unaware of their category but if offered the list of symptoms might find that they can make the move from Type I to Type II.

  12. Karen
    Karen November 5, 2007 at 5:03 pm | | Reply

    “The poor woman does not put herself out there as a champion of the disease and now she is being vilified for one simple quote, which may actually be TRUE for her.”

    Chris I have quoted your comment above. The truth is…what SHE said is that she is a type I who is now a type II that is NOT true for her. If she went to some Big Endo’s and found out she has a different diagnosis than she should have said that! A type I does not come off insulin…period. Not unless they have been cured. A type I does not “turn into” or “morph” into a type II! A type I does not “turn into” MODY. Again, it’s a misdiagnosis not a “I’ve changed to a different type of diabetes”. It doesn’t work that way. So, if she was misdiagnosed then THAT should have been her comment.

  13. RichW
    RichW November 5, 2007 at 5:48 pm | | Reply

    If Halle said she weaned herself off insulin thanks to a healthy diet and good living, she is misinformed. If T1 and T2 were treated as two completely different diseases, which they are, people would be less likely to make the mistake of believing you can transition from one to the other.

    I have coronary artery disease. It’s lumped under heart disease but it’s far different from valvular heart disease which is a disease involving one or more valves of the heart. I can’t imagine anyone saying that thanks to a healthy diet and good living I’ve weaned myself off Lipitor. I now put myself in the valvular heart disease category.

    People understand the difference when it comes to cancer and heart disease but not diabetes. Maybe it’s the Type 1 and Type 2 terminology. We might see a better understanding if the two were divided into three types: insulin dependent, insulin resistant, and insulin deficient.

  14. Chris
    Chris November 5, 2007 at 7:40 pm | | Reply

    And I have quoted you.

    “So, if she was misdiagnosed then THAT should have been her comment.”

    And we are all perfect in front of the media and exactly accurate with everything we say? Again, she does not hold herself out as a spokesperson. Before I knew about MODY I called myself a “Juvenile Onset, Non-Insulin Dependent Diabetic”. Every doctor wrote TYPE I on my chart because I was diagnosed as a kid. It is also quite possible that HB knows nothing about MODY and did what I did in college, I stopped taking insulin and found I was doing just fine on diet and exercise. That would seem to be weaning oneself off insulin.

    I will not argue that the Type I and Type II lingo is confusing as the two types are different diseases.

  15. Chris
    Chris November 5, 2007 at 7:52 pm | | Reply

    Sara,
    Sorry, just read your post. I agree with everything you have said. Sadly, there are still many DOCTORS and I have seen a few like this in the past 5 years (only once, then I move on) who still define Type I as insulin dependent and Type II as non-insulin dependent. As I mentioned above, I no longer define myself as a “type” and I am very clear with people that my godson (unrelated) has an auto immune disease and that he parents did nothing to cause his diabetes.
    I was also very careful to point out that my godson will probably not be able to live without insulin, even tho I was diagnosed as a child and I do.
    I went on the pump prior to getting pregnant and you should have seen the fits I gave the OB’s trying to put a label on me in the chart. “Juvenile Onset, Non-Insulin Dependent, but on a Pump for the purpose of delivering a healthy baby.”

    Peace to all, its hard enough!

  16. jvj24601
    jvj24601 November 6, 2007 at 4:23 pm | | Reply

    I don’t know about you guys, but I always get my information about diabetes from Hollywood Starlets.

    What better source to learn the best way to combat this disease and stay on top of medical information?

  17. AmyT
    AmyT November 6, 2007 at 8:58 pm | | Reply

    Good one, jvj. If she were “just” a Hollywood starlet, I wouldn’t have been so critical. But when she signed on for this national diabetes awareness campaign http://www.diabetesaware.com, supported by the IDF, Halle volunteered herself as a figurehead for diabetes awareness and information. To my mind, she’s reneged on that responsibility with her recent (ridiculous) diabetes-related statements.

  18. Josh
    Josh November 26, 2007 at 12:51 pm | | Reply

    I’ve been eating raw and I’m trying to get my mother to go raw. She has diabetes and I want to help her.
    Anyone heard of “Raw For 30 Days”? It’s a film about diabetics who eat only raw and improve their health.
    take a look and see what you think.

    http://youtube.com/watch?v=jSuqCMld00w

  19. kate
    kate December 28, 2007 at 12:57 pm | | Reply

    this says nothing about how both the diabeties work this is a bunch of bullshit!

  20. Katharine Swan
    Katharine Swan March 22, 2008 at 12:49 pm | | Reply

    I just ran across this story, but so far I see no mention of what *I* think is going on here.

    I am a type 1 diabetic, and I have been told numerous times that during pregnancy, a diabetic woman needs CONSIDERABLY less insulin, sometimes even none at all.

    Halle’s baby was born recently, but so far I haven’t found anything saying that her need for insulin returned. However, I am guessing that it will (or probably already has, and she is just too embarrassed to tell the press).

  21. Hannah
    Hannah March 2, 2012 at 1:14 pm | | Reply

    Why is it so hard for you people to think that there isn’t a cure for type 1 diabetes? Is it so hard to believe that pharmaceutical companies and the stupid FDA are intentionally making people believe there is no cure, because if they were to cure it, then they would lose a boat load of money! NO scratch that, they will lose a SHIP load of money!! My husband has had type 1 and he is positive that his pancreas sometimes produces insulin. We are looking into Yoga for diabetics as we believe he can be cured. I for one believe Miss Berry when she says she went from type 1 to type 2.

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