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JDRF describes Type 1.... very negative

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

  1. BrokenPancreas

    BrokenPancreas Banned

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    Well, that's what makes the world go round.
    We all have our own opinions.
    I personally think it shows a lack of compassion, and I wouldn't send a love one to that hospital under any circumstance.
    I'm curious to know, as you say, "that this information is typically provided" when a child is dx, if the majority of parents on CWD were told or not.
    When my daughter was dx, all the training was done in her hospital room, and she was there lying in the bed.
    I think it would have been in very poor taste if they started talking about all potential complications and horrors in front of her.
    But, again, that's just me, if another parent doesn't mind that info said in front of their child, then who am I to say how to raise your child.
     
  2. Sarah Maddie's Mom

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    At Yale we were told that she'd live a normal life span and be able to have children and that while we had a lot to learn that she would live well with D. No one mentioned blindness, limb loss or any of the other worst case scenario stuff, as usual, YDMV.
     
  3. BrokenPancreas

    BrokenPancreas Banned

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    That would seem the most ethical and logical and COMPASSIONATE.
    Oh, you reminded me Sarah, they also told me that she would be able to have children as well.:)
     
    Last edited by a moderator: Aug 20, 2010
  4. MHoskins2179

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    The many responses and sub-topics that have come up after the original post show quite clearly that Your Diabetes May Vary, and opinions certainly do vary whether we're talking about JDRF messaging, school D-Management practices, or diagnosis info provided by hospitals.

    On the original point of the JDRF messaging (which ties in with so many of the above-mentioned and other points), some parents will see it one way while others will see it in completely the opposite way. Then, there's everyone who falls in between to some degree. That's the beauty of people having the right to choose how they parent.

    It seems that we as a Diabetic Community can learn from these varying opinions and approaches, and reflect on those as we individually and collectively approach the general public and media when telling stories about Type 1 diabetes. The full story, from possible complications and quality of life issues to how schools deal or what hospital diagnosis stories mean. This seems particularly timely as we approach World Diabetes Day on Nov. 14 and work with groups such as Diabetes Advocates, JDRF, ADA, and more to tell the Type 1 story.
     
  5. Seans Mom

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    The information was provided to my husband and I, not Sean. Along with other information to explain why it's so important to keep on top of his blood sugar. Not knowing doesn't make it go away. And yes, even in this day and age, complications still happen. The daughter in law of a good friend had her leg amputated not long ago (this year) from the complications of type 1. Another friend died recently(week and half ago) from complications of type 2.
    We've read on these boards of others with family, friends and neighbors who have had complications or worse.
    There was nothing about telling us that wasn't compassionate. I felt the opposite, they were letting us know so we could take all possible precautions. I may not have known much about diabetes but the complications weren't a new revelation to me and because they brought it up, it gave me the chance to discuss it with them. To discover that there are things I can do to lessen the possibility.
    So you may think it was not compassionate and would choose not to take your child to a top notch hospital because of it, but they saved my childs life and I'm very thankful to them for that.
     
  6. JoseC

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    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. According to the National Institutes of Health, the financial impact of treating diabetes, in all its forms, accounts for more than $174 billion in health care costs in the U.S. every year -- and individuals with diabetes represent approximately one in three of all Medicare expenditures.

    I agree with this approach. I would like to take you back in time to the 1930's, 40's, and 50's. There was this disease called Infantile Paralysis (Polio). It caused much death and suffering to young children and some adults. The National Foundation for Infantile Paralysis now known as the March of Dimes was the organization created to help those with polio and to find a cure. The March of Dimes used harsh language to get people to contribute money.

    There was this ad called the Crippler. A ghost like figure is stalking a town where children play. A sinister sounding voice says you can try to hide but you cannot escape the Crippler. (The Crippler being Polio.) A voice says give money now to defeat the Crippler. To defeat Polio.

    The March of Dimes did use positive descriptions to get people to contribute money. They talked about the girl who had Polio who could not walk who after receiving therapy funded by the March of Dimes could walk again. But for the most part the March of Dimes used harsh language and painted a vivid picture of the horrors of the disease to motivate people to contribute money. So they could fund research to find the cause(s) of Polio. So they could fund research to find a cure. So they could fund Dr. Salk's research.

    I saw a documentary on Polio and two parents were being interviewed on what they experienced when their son was first diagnosed with Polio. As they talked tears welled on their eyes. These many years later they had not gotten over that moment. It affected them deeply.

    I wish it were different but what motivates people to contribute to diseases such as Polio and Diabetes is to use harsh language and by painting a vivid picture of the horrors of the diseases. If this motivates people to contribute money to find a cure for Diabetes I am for it.
     
  7. MichS

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    I agree. Why would the government fund research if the advocates went in to the meeting saying, "I have control of my diabetes and am managing it without any problems!" If they heard that all of the time, they would put money into things that CANNOT be managed.
    I know it is harsh, but taken in context I think they are approaching it right.

    I'm sure every lobby group makes things sound as bad as they can be in order to get the money they need.
     
  8. StillMamamia

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    What I think we should keep in mind is that this (the JDRF's QL comment) is not personal (as in directed to any of us). But it's interesting and understandable (to a degree) how personally we take it.
     
  9. hypercarmona

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    I agree with the JDRF statement, but it doesn't necessarily apply to me at this very moment. There have been times in the last fourteen years where my quality of life (and the lives of the ones I love) was greatly affected by diabetes, but it's not like that all the time. Part of me thinks that it's necessary to emphasize the negative aspects of type 1 for the general public because there are no physical signs you can point to and say "Look how sick they are! We need funding!!". You can't see that my BG is 400 or 20, or if I've got bleeders in my eyes, or if my kidneys still work properly, so there isn't the same impact. The other part of me knows that if you do what you're supposed to do, for the most part, it's not always horrible. It's always there, every minute of every day, but it's not always horrible. But who cares to cure something that is "manageable" and not always, constantly, bad? The question would then be, if we can live with it and "control" it, then why don't we just live with it? Diabetes must not be that bad, why bother wasting time or money on finding a cure for something like that? That's not the reaction that I would want if I were trying to raise funds for a cure.
     
  10. sooz

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    I just read this whole thread for the first time and I side with those who think JDRF needs to be blunt and forthright to obtain needed funding. I would like to address the quote I read that said:

    QUOTE: "When Ian gets older and asks you if his quality of life is ruined, or less than a friend, will you tell him "yes"? "

    Hailey is only 8 and we count ourselves among the lucky ones here who have good health care and lots of family support and the best of everything etc etc etc. HOWEVER, Hailey has already HERSELF cried and said "It's no fair I have diabetes" Have your children ever used the expression "It's not fair" regarding something to do with D?

    Of course children use that expression for everything under the sun..it is no fair their brother got the bigger cookie etc..but really, Hailey is right. It IS no fair she has this, and you cant discount her feeling that way.

    I know her D is being managed right now to the best of our ability and resources. What worries me is when she is an adult and MUST find a job that will pay good benefits for her care. An example of what tugs at my heart, for example, is when she is at D camp having a wonderful first time experience, and even there she has to miss an activity because she is low and has to go test for it.

    Hailey is our beloved first grandchild and from the time she was born to the time she was diagnosed with D to today we have lived and breathed every moment to make sure her life was full of joy and love and possiblities and wonderful experiences. And she has given us those things in return. But if we said our hearts were not broken the day she was diagnosed and the times we had to hold her down kicking and screaming to give her her first shots we would not be telling the truth. We lay awake worrying about her and also thinking of the ways the burden of D has affected OUR daughter's life, and the responsibilities and care she has had to assume, and our hearts are broken for her too. That doesnt mean we are not truly proud of Hailey and of our daughter and that life does not go on as before. It just means that, well, D is there, every day, every moment, and has to be dealt with. As we say here at CWD, it is our new reality.

    There was a wonderful picture taken of Hailey at D camp this year. She was climbing a huge tall rope ladder/rock wall. She was wearing a helmet and was really, really high up. She looked so little. I know she was afraid because her daddy told me she was afraid when she started. But she DID IT. SHE DID IT ANYWAY. It made me cry when I saw the picture because it made me think of how brave and strong she is everyday with her D. She just handles it. She has a wonderful quality of life ANYWAY. But D still is a big wall she has to climb every day.

    I dont understand how we get hung up on rhetoric or whether people should be told at the time of diagnosis about complications. To me, of COURSE we should be made aware of as much as possible, so we can understand how serious our responsibilities are. There is so MUCH to learn and understand.

    I also want to add that I dont believe that everyone is as lucky as we are..in terms of being able to obtain good care..and also for that matter in terms of having D verses C or some other worse disease. (please dont fixate on my term "worse" or "disease"). However, we do have D, and I am grateful for JDRF and all other fundraisers and researchers who are working to find a cure or other advances that will mean that Hailey WILL have a better QUALITY of LIFE. Already, researchers have brought her the pump and fast acting insulin that has made her life easier and therefore better. That is how I think of the term quality of life.

    I have so much respect for you parents who love your children so much, and use your intelligence and your energy and your means to provide for your children, and have such knowledge and experience to pass on to all who are willing to listen and to learn from you. You are all truly heroes. For me, I look not at how a phrase is coined, but what is meant by it, and what its purpose is. I dont object to the JDRF article.
     
  11. hawkeyegirl

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    Same here. I'm not sure severe complications (other than severe hypoglycemia, obviously) really need to be discussed at diagnosis. It's not like they're going to lose a limb if doctors wait for a couple of appointments to go by before getting into the really heavy stuff. :rolleyes: I probably would not have handled a discussion on long-term complications very well at that point.
     
  12. emm142

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    We were told at dx that good BG control is necessary to avoid complications. That's not to say that they went into gory detail about exactly what the complications entailed. They still haven't done that, and I wouldn't expect them to - they just run regular checks for them, and leave it at that. However, if I had been diagnosed and was not told that there would be complications if I ran higher than normal all the time, I would probably not have had the same determination to get my BGs down.

    Like a lot of the kids here, I was seriously ill at dx and my BG and A1C were both off the scale. For the first week, I mostly hung out in the 300s and 400s because, they told me, it is important to bring a prolonged severe high down slowly. I started to feel better when I reached 200-300. Obviously I was afraid of severe highs and DKA, but if I had not been told about possible complications I would probably have been far less aggressive with the mild highs (because lows were a pretty major fear at that point).
     
  13. Ellen

    Ellen Senior Member

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    Looks like JDRF uses measurement of QOL in studies


    Quality of Life Measures in Children and Adults with Type 1 Diabetes: The Juvenile Diabetes Research Foundation Continuous Glucose Monitoring Randomized Trial.

    http://www.ncbi.nlm.nih.gov/pubmed/20696865

    There are quite a few QOL studies with respect to diabetes and you can search for them on pubmed
     
  14. Mimi

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    I don't object to the wording in the JDRF statement. As others have stated, they are trying to raise funding. The more you tug on heartstrings the more money you're going to get.

    I don't agree that my daughter's quality of life is diminished because of diabetes though. Her quality of life is certainly, at times, different than that of her siblings because of diabetes. Like when she has to sit at the side of pool waiting for her blood sugar to come up after treating while everyone else is swimming. But I don't think the quality of her life is any less and I don't think she would either.
     

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