the ADA vs. JDRF (putting “my type” into their definition box)

According to the ADA (and my doctor), Type 1 diabetes is classified as such: In type 1 diabetes, the body does not produce insulin.

the JDRF though classifies it as such: Type 1 diabetes is an autoimmune disease that results in the permanent destruction of insulin producing beta cells of the pancreas.

according to the JDRF, even though i have permanent destruction of insulin producing beta cells of my pancreas, and i no longer produce insulin, i am not type 1 because my diabetes was not caused by an autoimmune disease (I am an OTHER). my c-peptide is non-existent, but that’s still not good enough.

i’m beginning to feel very second class and bullied because of that damn word “autoimmune”. i feel like i’m in high school again with this way of thinking. “oh don’t talk to her, she’s not autoimmune” “she’s not one of us!”, adults get type 1 too, not just children. and even us “Others” are not treated withe respect.

my diabetes will never be cured. whether a cure is found or not. the only hope for me is when my kidneys finally give out i have a pancreas transplant along with my kidneys.

but even then the JDRF won’t consider me good enough to be “one of them”.


9 responses to “the ADA vs. JDRF (putting “my type” into their definition box)

  1. Autoimmune is a very important disctinction in talking about type one diabetes. It’s true that it does not apply to other types which have very similar clinical manifestations… LADA, MODY, Surgically Induced… but it still is true when defining type one. I adhere to the JDRF definition… it is far more detailed and JDRF specializes in type 1. What ADA says about type 1 is true, but it is also true about other forms of diabetes, and there are many other pieces of information about a person’s diabetes that lead to a diagnosis of type one.

    A person can function like, and easily define themselves as, a type one diabetic, but that doesn’t mean that type one diabetes is an accurate clinical distinction for their particular disease. Many people with LADA define their illness as type one to differentiate it from the very public, very known type 2, and to indicate that they are insulin dependant. Because type 1 is one of the 2 well known types of diabetes, it is often used as an explaination tool.

    Diabetes is difficult. All types. There is no such thing as being “good enough” or “sick enough” to belong to a specifically diagnosed group. No one is saying that your struggle with diabetes is any easier than anyone else who is insulin dependant and does not make insulin, but they are saying that your diabetes is surgically induced, which is not clinically the same as type one diabetes. Treatment, managing, experience… all of that is the same, just not the diagnosis. Remember, diagnosis is ONLY a clinical definition of your illness. It’s nothing more.

    I’m sad to hear that you feel like a second class citizen. I don’t know what caused that feeling, but I do know that it is important to me that people know the facts about my disease (if they’re curious), and autoimmune is one of those facts. The facts of your disease ARE different, but that DOES NOT lessen them in any way. Take the opportunity to educate people about surgically induced diabetes! Your experience matters.

    Take care, Landileigh.

  2. Beth, Thank you so much.

    I am not trying to lessen the diagnosis of Type 1 diabetes.

    The question just came up again when I was filling something out. I had one of three choices: Type 1, Type 2, and Gestational. And then it came up again yesterday with the new site. I simply choose “type 1” in the box, as I go with how my diabetes is treated.

    Part of the problem for me is I can’t get my doctor to do the antibodies test, he cannot see my point. All he will say is “you have type 1 and that’s enough to know”, no, I’m being treated as type 1. my nephrologist gets it, but he can’t order the test.

    I just feel if I click that “type 1” box that I’m not being true to myself or to people like you. I also didn’t have a good experience with the JDRF when i first was diagnosed.

  3. I was diagnosed at 23, so that didn’t really fit the “classic” juvenile diabetes either. It was hard to learn all of this myself, without a parent to help or do it for me, and it was hard to explain to my friends that even though I wasn’t 8 or 10, my week in the ICU was due to “juvenile” diabetes.

    Obviously, some of these online forms aren’t very thourough or helpful. I think identifying as type one in a situation where you are only offered 2 choices is the right way to identify. Maybe telling folks about your situation will help them broaden the choices!

    And about a cure… well, so far, there isn’t one. And honestly I don’t have much faith in there being one in a full sense… though I do hope for a closed loop. That, we could all benefit from!

    Anyways, I guess what I want to say is that how your diabetes is defined is just an external thing. How you live with it, how it effects you, how your life has changed because of it… all of those things are internal things, and the only things that matter. I hope that you keep on finding ways to deal with the complexities of this illness. I’m cheering for you!

  4. Landileigh the label is so confusing. They should really have more than just the 1 & 2. It should be like life style diabetes, autoimmune diabetes, surgically induced diabetes, etc. The umbrella categories don’t cover every individual, especially people like you who have more of the type 1 management aspect but lack the autoimmune characteristic. Craziness, and insulin dependent doesn’t even work because type 2’s can be insulin dependent too. It’s all a mess. It’s more about you caring for yourself in the best possible way than the label.

  5. landileigh,
    I think you should just say that you are a “special” type 1 – which is true. You are a special person. Sorry whatever you were filling out made you feel otherwise.

  6. I can imagine that it must be frustrating to figure out what to call your diabetes.
    How about just saying, “I have dam diabetes!” πŸ™‚
    Have a good weekend!

  7. I call myself ‘pancreatically challenged’ these days – just as a joke really, but I’ve grown to like it!

    My son came up with an even better name… Carbohydrate Incompatible anti-pacreatitus disease.

    Niiiice. lol

    Anyway! I was just stopping in here to say thanks – got the sussy and I’m very happy! I posted about it today if you want to have a read.

  8. I’m with Molly and M! πŸ™‚

    Labels are a tough thing, even for me. I’m type 1 AND insulin resistant, which if you want to get really technical, means I’m type 1 and type 2 at the same time. But I don’t like to mention these things in public, because honestly, I know which came first (the type 1 at age 8), and some stranger will probably just attribute my D to the fact that I’m overweight and lecture me on avoiding sugar to “cure” myself.

    I think all that really matters is how you live with it and how you take care of it in the long run.

    However, some fill-in-the-blank stickers for our diabetes types might be a plus! πŸ™‚

  9. Sorry to hear that those forms made you feel bad.. There’s so many different classifications and categories to fall under. having surgically induced diabetes must be frustrating just because that one factor prevents you from being classified as type 1.. but, as jillian said, all that really matters is taking the best possible care of yourself as you can! don’t feel left out… we’re all in this together no matter how we were diagnosed.

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