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1 in 20 die from low blood sugar - JDRF ad - in paper today

Discussion in 'Parents of Children with Type 1' started by selketine, Nov 2, 2011.

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  1. Helenmomofsporty13yearold

    Helenmomofsporty13yearold Approved members

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    I am not a scientist, but an analyst and this is how I see we got into this mess. JDRF informed us there ad is based on the findings of Dr. Cryer. Here is a little about him:

    "Biography

    A graduate of Northwestern University and its medical school with training in internal medicine at Barnes Hospital and in endocrinology and metabolism at Washington University, Dr. Cryer has been a member of the faculty since 1971. He served as program director of the General Clinical Research Center from 1978 to 2006 and as Director of the Division of Endocrinology, Diabetes and Metabolism from 1985 through 2002. He has been the Irene E. and Michael M. Karl Professor of Endocrinology and Metabolism in Medicine since 1995. A past president of the American Diabetes Association and a former editor of its leading journal, Diabetes, Dr. Cryer's research has been recognized by the Banting Medal for Scientific Achievement of the American Diabetes Association, the Claude Bernard Medal of the European Association for the Study of Diabetes, an honorary doctorate from the University of Copenhagen and a MERIT award from the National Institutes of Health.

    Research Interests

    The themes of Dr. Cryer's translational research are studies of the physiology of glucose counterregulation - the mechanisms that normally prevent or rapidly correct hypoglycemia - and of its pathophysiology in type 1 and type 2 diabetes, and the relationship of the latter to clinical hypoglycemia in diabetes."

    Since this started, I have been reading a ton of research reports and almost every one of them references Dr. Cryer's work. So, members of this forum think they know more than Dr. Cryer and just about every other researcher in this field????

    The problem is that a percentage of Type 1's experience more severe lows than the general Type 1 population. The DCCT trial did not include PWD with a history of severe lows. The other problem is that until CGMS, it was hard to say what the blood sugar reading was at the time of death. Now they have proof that lows cause death, cause heart issues, etc.

    I am surprised there are not more deaths related to alcohol use and driving. My DD is getting inundated with those messages and not even doing either yet.

    In my little world, I have heard of several Type 1 deaths in the last 2 years. Usually, you hear "diabetic coma" as the cause of death. Does that mean a coma from a low or DKA? I worked for an insurance company for a short while and saw a death claim that stated diabetic coma as the cause of death and when I read the 42 year old man's medical reports he had an A1C of 6.5. There was a 16 year old die in her sleep and 2 other people I have talked to told me of parents who lost their child to it. My DD's coach lost his 50 year brother to DKA. He had a virus and his partner of 12 years who was a nurse thought it best to let him sleep it off, neither of them thinking of ketones. A college teacher I had also died of a diabetic coma (he may have been a drinker). I met a young woman last month who told me she has had 52 emergency visits/ambulance calls. She just got a pump and was hoping that would change. The Type 1's on the forum have bravely been telling you their stories about how they tank so fast, it was lucky someone was around to assist.

    The risk is real and the ad is not lying.

    Of course we would much rather have a cure than have our CWD hooked up to an AP, but we might have to hope for the AP in the meantime.
     
  2. MommaKat

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    Helen, Thanks for posting Dr. Cryer's bio and work history, as well as his area of research interest as I find both incredibly useful info in this ongoing discussion.
     
  3. wilf

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    For what it's worth, I think Dr. Cryer has gotten it wrong when it comes to the risk of Type 1s perishing as a result of hypoglycemia..
     
  4. SueM

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    Hmmmm. Sometimes the "accurate" data/studies are based on an improper scientific process. Or, at times the data is stretched (as is possible in the discussion here... or not...). Now, certainly the FDA is a big part of the problem and I apologize for leaving them out. Who is MORE to blame would be the question to ask, I suppose.
     
  5. buggle

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    Me too. The one paper I looked at -- the UK study -- he seems to have attributed all deaths to hypo, when the paper did not say that. And as Wilf has pointed out repeatedly, it's using old data and methods of D management. So, it's not relevant to being predictive of the hypo odds of kids today.
     
  6. GRANDY

    GRANDY Banned

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    I wonder if the man could come on here an explain his data.
    Has anyone contacted him?
     
  7. GRANDY

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    I'm assuming that there is many who pass, whose kin don't post it on the facebook for others to read.
    Unfortunately, I do believe that death from hypos is under reported and I do believe that the JDRF placed that ad to benefit our children, grandchildren and everyone who was stricken with this disease. I do believe the data presented by the JDRF and hopefully this will open the eyes to people who have the disease who think hypos are not prevelant. God Bless all.
     
  8. GRANDY

    GRANDY Banned

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    Why, Wilf?
     
  9. Lee

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    That was stated when you had the f'bomb in the post - a guaranteed thread closer.
     
  10. Lee

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    Unfortunately, it will not benefit my child or your grandchild to be told they have a 1 in 20 percent chance of dying from a low blood sugar - "I know - I saw it in the NY Times"...

    We have dealt with fear of death for a few years now. Anytime she reads or hears or someone says she will die from T1, she sulks forever and won't talk to anyone about it. She has nightmares. Her grades drop. She stops talking to her friends. MY CHILD is already dealing with enough garbage from having T1 - this does not need to be added to her load. So no, I do not think JDRF had any concept of what they were saying to T1 Kids, what message they were sending, when they placed this ad.
     
  11. hawkeyegirl

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    No, of those who DIED, 10% died from hypoglycemia. Of all of them, 0.5% died from hypoglycemia. It is inaccurate to say that 10% of the study participants died of hypoglycemia. It is accurate to say that 0.5% of the study participants died of hypoglycemia. It would be like me saying, "Holy crap! 100% of my friends have died of breast cancer!" when I've only had one friend who has died, and she died from breast cancer.

    Also, you still cannot explain why, if the odds of dying from hypoglycemia are 0.5% in 30 years, if the odds remain the same over one's lifetime, why the odds are not 1% in 60 years. But I think you have tried, and I don't expect you to go further. I think we're at an impasse here. Thanks for the reasonable dialogue, though. Appreciate it. (Seriously, not snarky here.)
     
    Last edited: Nov 10, 2011
  12. hawkeyegirl

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    Yes, we all know that you have no interest in the statistic and that you think that anyone who does wouldn't care if their child died. You did indeed make that very, very clear in the other thread. I mean, really, if people could defend the statistics in the ad, they wouldn't have to fall back on, "Well ANY death from hypoglycemia is one death too many." Not the point here.

    Now, exactly what do you have to add to THIS thread where we are having a respectful discussion about the actual statistics? I suspect it's on the verge of being closed, since it's no longer a rational discussion about the statistics anymore, so you might as well get one more good shot in about me not caring if my child dies.

    Personally, I care that the organization who purports to represent me be honest and truthful when they take out a full-page ad in the NYT. I'd prefer that they not take a bunch of studies, make a wildass guesstimate, and state it as fact.

    I think it's very telling that no one from JDRF has been back on to say, "Here's exactly how we got the number."
     
    Last edited: Nov 10, 2011
  13. My_Dana

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    Wow. This thread has really taken a play on the numbers.

    I would agree -
    10% of those who died is most definitely NOT the same as 10% die.
    It's simply a matter of a % of a %.

    To me, it's -
    10% of 100 = 10
    10% of 10 = 1

    The other question I believe is, 0.5% in 30yrs would still be 0.5% in 60yrs.
    (twice the amount of people, but the same % died).
    It would only go to 1% if there were an increase in deaths due to lows.
    Hope that makes sense.
     
  14. emm142

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    I don't think this is correct. 0.5% in 30yrs would be 1% in 60 years. If you start with a study of 1000 people and 5 died in the first 30 years from lows, you would expect that ~5 would die in the next 30 years from lows, so after 60 years 1% of the study cohort would have died from lows.
     
  15. swellman

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    And in your example people live to be 1000 which is exactly why people are getting this statistic, and therefore, the extrapolation wrong.

    I am reaching out to wilf to, at least, explain the extrapolation - he doesn't dispute the 10% - he disputes whether it can be assumed to be constant and extrapolated out to end of life.

    Can you at least do that wilf?
     
  16. emm142

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    Why on earth would people live to 1000 in my example?
     
  17. hawkeyegirl

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    No, in our example, the other people will have died from other things.

    Do you still claim that in the study, 10% of the participants died from hypoglycemia?
     
  18. hawkeyegirl

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    Okay, can we agree that if you take a young group of T1s, of those who die, they are more likely to have died from hypoglycemia than other causes than if you compare them to a group of 80 year olds with T1 who die? That is, the percentage is NOT constant over one's life.
     
  19. emm142

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    Yes.

    Wait, you weren't trying to convince me? ;)
     
  20. swellman

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    I NEVER claimed that ... because it's not accurate.

    I have said this over and over and over: 10% of the fatalities, which was 5% of the participants, were attributed to hypo and perhaps more if you consider 'Sudden Death".

    The extrapolation part is where you assume that the 5% sample is statistically relevant and the hypo percentage can be assumed to be constant, like violent death or traffic accidents, and conclude that, when they all finally die, 10% will have been from hypo.

    As a counter argument for another statistic, deaths related to heart disease will almost certainly increase in percentage over the lifetime of the participants as they age and almost certainly not a constant and it would be, in my opinion, unwise to assume that the sample of 5% was a good statistical sample for end of life assumptions for heart disease because of the relative young ages of the participants.

    The real question is, as wilf asserts, whether the data or sample, accurately represents today's risk or whether it is skewed by outdated therapies or technology.

    I don't know, nor does he, when the hypo deaths occurred so, it's impossible to make any accurate assumption as I can assert, counter to his, that it's equally likely that the deaths were more recent due to more aggressive treatments and, therefore is a good representative sample.

    Neither of us know with any real accuracy which one is more applicable than the other or if, perhaps both are true or neither.

    The bottom line is that the extrapolation of the 10% all the way out to the the end of life is an assumption and not, in my opinion, an entirely wild one. I do not tend to believe that the risk of death from hypo varies wildly over the lifetime of a person or the general T1 population so, therefore, in conclusion, and this is the important part, all things remaining constant, I believe it's reasonable to assume that over the lifetime of the participants the end statistic could end up around 10%.
     
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