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JDRF describes Type 1.... very negative

Discussion in 'General Discussion' started by BrokenPancreas, Jul 25, 2010.

  1. Skyefire

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    I agree, I have the utmost respect those who feel differently then I do. Which is the main reason I did not quote or pick sides with some of the others post. (Please dont take that as me having a problem with you commenting on mine, because I do not:)) I do not think that his life is going to be worse, my DS has a hard time with his D, very hard to control, high isf's, totally unstable. I truly hope that changes with age. But if he is like my mom it will stay the same, as he grows :(

    I am glad that your son has a great life, and truly hope that his life stays as normal and healthy as possible!!

    I do know from growing up with it, and dealing with it with my son. It is not the same as living without D. There is always going to be a difference. Some days worse the others, and I am hoping that most of them will be wonderful and amazing. I do know that some of them will not be.

    Things have changed alot of over the years, but there are still problems and complications. Our life was good, but it was never easy, and D was one of the main issues.

    Diabetes will not hold back out lives. But it will be a challange!
     
  2. Becky Stevens mom

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    Jonah, this post is powerful and comes from your heart. I thank you for letting me see this issue through an adults with type 1s eyes
     
  3. Christopher

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    There are all kinds of statements made, on the Internet, on TV, by friends, family, etc about diabetes. Some are good but many times they are wrong and misleading. I take it as a personal responsibility to try and correct them when I can. But it is important to look at the context of each statement and where it is coming from. Some come from a place of ignorance, some come from trying to raise money, which I think is the case here.

    I know how I feel about MY situation, with MY child. The JDRF, the TV, the moron at McDonald's, etc have no impact on how I view our situation. So I don't usually get bent out of shape when I see something like this. To the OP, things only have as much power over you as what you allow them to have.

    For me, this thread reinforces the fact that diabetes is such an individual disease and each family comes at it with a different perspective. Something that breaks my heart might be just a minor annoyance to someone else. We can't tell each other how to feel about this disease, but we can share our perspectives and hopefully support each other. Yikes, where did that soapbox come from?? :eek:
     
  4. Scribe

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    it's worth noting that the jdrf comments are a sales pitch and in political terms the words aren't surprising and are even useful. (the competition for federal dollars often turns into an episode of ``queen for day'' with ailments and interests racing to win the saddest story contest. it's been that way for years.)

    are the comments entirely accurate? probably not. in my own case, i can emphatically say that D has IMPROVED my quality of life; it has never restricted me in anyway whatsoever. that's just me. others a different and that's the reason for the varied responses.

    but ... in terms of salesmanship, it's a smart move even though the reference to quality of life being diminished is overstated.
     
  5. momtoirishtwins

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    You can receive disability with type 1 diabetes if you have complications from it (vision impairment, recurrent DKA, hypoglycemia).
    My child is on medicaid, which covers his medicine.
     
  6. Lisa P.

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    Here's on of the places I'm coming from. My dad was a Marine. Now, here's the JDRF paragraph:

    Type 1 diabetes is an autoimmune disease that can occur at any age, but is mostly diagnosed before age 30; between 1 and 3 million Americans live with type 1 diabetes. The disease requires multiple insulin injections daily just to survive, is difficult to manage, carries the constant threat of devastating complications including blindness, kidney failure, heart disease, stroke and amputation, and usually results in a drastic reduction in quality of life.

    Let's change it to this.

    You can be a Marine at any adult age, but most Marines are under 30 years of age. Thousands of Americans are Marines. Marines have a duty to train and endure harsh conditions like 115 degree weather, sleep deprivation, physical stresses, sometime imprisonment and torture just to survive. They can face complications from served time including PTSD, amputations, organ damage, and head trauma. Being a Marine usually results in a drastic reduction in quality of life.


    I wouldn't consider the second to be a valid "pitch" for a foundation that served vets. That last line would invalidate the whole statement, and possibly invalidate the organization, for me. Same with diabetes.

    Harder lives aren't necessarily of diminished quality.
     
  7. swellman

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    Keep in mind that "quality of life" is a medical term when used in the JDRF context. I can't say what it is defined as but I'm pretty sure it shouldn't be taken personally and I don't think it's as subjective as some would have us think in this context.

    I can think of another example: dialysis. I am sure that there are people who are as happy as clams in their own personal life while having to endure the process but I would wager that, in a medical context like that of diabetes, it would be universally seen as reducing the "quality of life".
     
  8. StillMamamia

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    Ok, just wanted to follow through with the issue that D has improved your quality of life. I think this is a misnomer, if you don't mind me saying so.:p I don't think it has improved anything as is, rather it may have made you what you are today, which I am assuming someone who faces life head on and doesn't let the little stuff get in the way. D may have paved the way for how you face life's challenges, but D as is doesn't improve anything. It's how if affects our outlook that may give it a "positive" status. However, D as is, sucks rotten potatoes. That is not to say that, despite living with it, one cannot live a good life.

    Kwim?
     
  9. StillMamamia

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    Wise words to live by!!

    Still the JDRF description is a sales pitch. How could they have worded it otherwise to hit the hearts of possible donators?
     
  10. Lisa P.

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    Oh, believe me, I'm keeping that in mind. Would be able to dismiss it as overblown rhetoric if I didn't.

    Dialysis is a great example of why I react so strongly to this language. Here's an article about how one in five Americans on dialysis opt to discontinue. Why? Because they prefer death to diminished quality of life (which often means they prefer to die than use family finances to further their lives). Without getting into a debate on all that, I definitely don't want this kind of thing linked to my three year old's diabetes.
    http://www.medscape.com/viewarticle/538855
     
    Last edited: Jul 26, 2010
  11. Lisa P.

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    Diabetes is hard enough to tug any heartstrings without the extrapolation. Tell me a toddler needs 6 shots a day, every day, you've got me.

    Everyone makes fun of the Sally Struthers appeals for a reason. You try to make a big overblown drama out of things no one is going to buy it, figuratively or literally. I know P.T.Barnum or someone said you'll never go broke underestimating the intelligence of the American public, but I personally believe it's ineffective as well as unethical to raise money with propaganda tactics. Use the truth.

    Also, I think scare tactics are limited. No one outside of families of people with diabetes finds the thought of diabetic amputation viscerally scary. Try telling people you can cure a disease that has been killing people for 5000 years. That appeals to every philanthropist.
     
  12. buggle

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    I'm not bothered by it. I would never say that sort of thing in my own fundraising, but then I suck and can't get fundraising off the ground. JDRF is the king of raising money, so this doom and gloom thing works and that's why they do it.

    My beef is how they spend their fundraising dollars, but that's a whole different discussion. :p
     
  13. swellman

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    I can't read the article.

    Is there some stigma attached to the term "quality of life" I'm missing? Someone previously alluded to it being used to determine life or death situations and you seem so put out by it that I am beginning to think I'm missing something altogether. Is there a meme that I'm unaware of surrounding it's use?
     
  14. StillMamamia

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    But the truth is that for many people living with T1 D, their quality of life is greatly reduced. Not everyone is facing D's challenges like you or I, or the rest of the people on this board. So, in a way, it is "a" truth, whether it confirms or denies our own, kwim? And yes, it is sad that this "truth" is the one being used. I agree with a more generalized tactic, like the one you mentioned about curing a disease that has been killing people for thousands of years.
     
  15. Lisa P.

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    Sorry, I don't buy that you and I have this thing covered but the rest of the world. . . well, diminished. :eek:
     
  16. StillMamamia

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    Well, not sure how you read my post, but it wasn't about a higher than thy neighbour type of thing.

    What I mean is that you and I have the tools and some, if not all, the knowledge, to help our babies lead full lives. Other people may not have those tools. I think if you have the tools, the knowledge, then you are able to have some fighting means and will to fight D, but for others they may not, so their kids are left with 2 BG tests a day, no ketone testing, not enough endo visits, etc, etc. The outlook then, for these kids/adults even is then, clearly, more bleak than that of our kids. (eta: and even so, we are not immune to the complications)
     
  17. Melancholywings

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    I see nothing wrong with it. They need to put a serious face on it in order to get the awareness they need for fund raising. No one can raise money for a happy, rainbow filled charity full of perfection.

    DD's quality of life is disminished, we work hard to lessen the impact on our family, we keep a very positive attitude about it. But her life does not have the same 'freedom' that her peers have. She can't lick a spoon with out counting carbs. There's a new rice krispie commercial where a dad is making rice krispie treats with his kids, it's a cute little bonding moment and the kids are eating freely from the pan. That commercial, and the freedom those kids have to just eat - to put food in their mouth with out a thought just kills me.

    DD takes pride in her diabetes. It's a part of who she is and that it's made her a stronger person. We encourage her to think that way. But if a person has limited access to education, support and supplies it's deadly. And that is a diminished quality of life.


    I saw a post saying that it shouldn't be labled as a disability? I don't understand that as that classification gives it legal protection.
     
  18. hawkeyegirl

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    Maybe. It certainly touches a raw spot for me in ways that I'm unable to articulate very well. It bothers me that if you lined up Jack's kindergarten class that someone would point to him and say, "This child's quality of life is lower than the other children." Maybe I'm living in a happy little cloud of denial, but I truly don't think that it is. I'm well aware that part of the reason why it is not is that we have good insurance and money to pay for supplies and a good support team, and decent brains to try to understand everything that goes along with having a D child, but I'm not arguing that NO child with diabetes has a lower quality of life, but that MINE doesn't.

    I think I equate "lower quality of life" with "life less worth living" or "less happy life". I don't think any of those things are true for my son.

    And I fully admit that I, personally, cannot stand to be pitied, and that I do not want anyone to feel sorry for me or my son. I'm sure I go overboard in minimizing the effects of D on our lives when I talk to other people, and maybe I'm fooling myself in the process. So when I hear a phrase like "lower quality of life," I think I start worrying that people are being encouraged to feel sorry for the poor little diabetic kid and his sad little life, and his poor, long-suffering mother. That's not how I view our lives at all, and the thought that anyone would look at us that way makes my skin crawl.
     
  19. chammond

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    At this point in my son's life this statement may not be accurate. However, I'm sure that there are many adult T1's out there who are facing the complications of D that would agree with it. I remember right after his diagnosis reading that 25% of T1's would need a kidney transplant during their lifetime, and even knowing that with current treatment this didn't necessarily apply to Logan, it was staggering and scary to me. Right now Logan is a happy, healthy, little boy and I don't necessarily think that his "quality of life" is lower than my older son. I think we all know that no matter how aggressively we manage D, our children will have to face the possibility of complications that may end up affecting their quality of life. Many people live long and healthy lives with diabetes, but there are also others who don't.
    I think the reference to people living with diabetes in other countries someone made was very valid also. My son may be lucky enough to have the best and latest treatments available throughout his life, but we know at least one poster on this board from Ghana who's sees children who don't have this and suffer for it. I know this is for funding in the US, but the research that comes from it may be able to have an affect globally. I don't really think the comment is that outlandish or exaggerated for this reason.
     
  20. emm142

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    Well, in my very humble opinion, the whole concept of quality of life is a bit dodgy, because who are we supposed to rate our life quality against when we can only know our own life from the first person perspective? Aside from that, if we say "kids with diabetes have a lower quality of life" - lower quality than what? Lower than kids with a perfect health record and a perfect family life who does perfectly in school? Or lower than the kid sitting next to him with a different health condition, with problems at home, whose struggling in school? You're never going to get a kid with exactly the same OTHER circumstances to your own, except the diabetes, so it's entirely impossible to test or judge.

    I still think it's okay to use in the context of moneymaking, though.
     

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