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A heartbreaking goal

Discussion in 'Parents of Children with Type 1' started by kyleesmom, Jul 28, 2009.

  1. kyleesmom

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    My great aunt was diagnosed with type 1 when she was little. She was recently awarded by the Joslin Center for living with diabetes for 50 years. Kylee was talking to my grandma about it and she said that they had given out the medals to about 2,500 people who had had it for 50 years and that there are less than 20 people who have a medal for 75 years. So Kylee's new goal is to be one of the people who get a 75 year medal. I didnt have the heart to tell her I hope she doesnt get the medal because I dont know that she would really understand that its only because I hope there is a cure long before that. To her, diabetes just is what it is. Its part of her and there is nothing in the forseeable future that will change that. She wants to work with diabetic kids when she grows up and I hope she doesnt get to because there arent any. She and her friend, who also has diabetes, plan to be counselors at their diabetes camp when they are too old to go and I hope there isnt any more need for the camp.
     
  2. Mary Lou

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    Our children are our constant inspiration, aren't they?

    Sounds like you are raising a compassionate daughter.
     
  3. Becky Stevens mom

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    Im with you Jill. Our kids will tell their grandchildren about this condition they had when they were young called diabetes. And that is hasnt been around for many many years. Your daughter sounds very mature for 11 and will go far in life Im sure:)
     
  4. Darryl

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    The sad truth is that these statistics reflect reality. Women with T1 historically have a life expectancy closer
    to 50 years than 75 (shorter than men with D, due to increased incidence of CVD in women before age 50).
    The only shot we currently have at giving our kids a longer life expectancy is to keep their the BG as close
    to non-D as possible.

    For all the talk about the pro's and cons of pumps/CGM's and the effort that goes into maintaining intensive
    control using these devices, life expectancy seems to be a good enough reason to put in the effort. There
    is plenty of research already (aside from the DCCT studies on complications) indication that cardiovascular
    damage begins at a young ages if BG is not well controlled.

    The good news is, that with all forms of control available today (MDI, pump, CGM, fast insulins, and digital
    BG meters) all of our kids have a great advantage vs. kids born 75 years ago. I'm hoping for 90's, not 75.
     
  5. Darryl

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    Very encouraging article for those who maintain tight BG control published this week in
    the Archives of Internal Medicine. This is the abstract. The full text article is here:
    http://archinte.ama-assn.org/cgi/content/full/169/14/1307?home. I can't publish the
    document here as it is only available for purcase. It contains more graphs, discussion,
    and statistics but the conclusion is fairly clear.

    Modern-Day Clinical Course of Type 1 Diabetes Mellitus After 30 Years' Duration

    Arch Intern Med. 2009;169(14):1307-1316.

    Results After 30 years of diabetes, the cumulative incidences of proliferative retinopathy,
    nephropathy, and cardiovascular disease were 50%, 25%, and 14%, respectively, in the
    DCCT conventional treatment group, and 47%, 17%, and 14%, respectively, in the EDC cohort.

    The DCCT intensive therapy group had substantially lower cumulative incidences
    (21%, 9%, and 9%) and fewer than 1% became blind, required kidney replacement,
    or had an amputation because of diabetes during that time.

    Conclusion The frequencies of serious complications in patients with T1DM, especially when
    treated intensively, are lower than that reported historically.
     
  6. WhyMyBabyGirl

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    Darryl,
    Is that statistic about life expectancy to 50 is for kids NOW diagnosed or in the past?


     
  7. Darryl

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    It is as of today, for kids born 50+ years ago. A recent paper by Dr. Hirsh stated 48 as the average lifespan for women with T1. Most life-threatening events are not due to the traditional complications of D, they are due to cardiovascular disease (something like 1/3 of women with T1 have had a heart attack by their 50's).

    The good news - there is ample evidence showing that CVD (along with the traditional complications of D) is greatly reduced with intensive BG control.

    The other article I just posted shows that overall risk is lower now than 50 years ago - but only if BG is actually controlled well.
     
  8. Becky Stevens mom

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  9. ecs1516

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    There is a lady at my church who has had type 1 for 56 years. She was diagnosed at age 14. She just turned 70! She has had no complications. Amazing. But she has been on an insulin pump since they first came out when they were huge.
     
  10. kyleesmom

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    I dont remember seeing that post Becky, but thats for showing it to me. I will be ordering the book today. Is it something Kylee could read, or is it written more for adults?
     
  11. danismom79

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    A CDE friend of mine got her 50 year medal last year.

    Keep in mind that to reach that 75 year goal, the person would have likely already passed the average life expectancy in this country.
     
  12. Becky Stevens mom

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    Hi Jill, its pretty much for adults but I think that there are parts of it that Kylee would enjoy reading and be able to understand. Alot of it is about the 50 secrets which is great for me right now as Steven is only 8 but there are the parts about the people that have lived long, healthy, happy, exciting lives for many years with diabetes that Ive read to Steven. I want all of our kids (and their parents:cwds:) to know and believe that its not only possible but probable that our kids will live long lives with diabetes and that our dream of a cure WILL be fullfilled
     
  13. kyleesmom

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    My biggest fear is that Kylee will get to be a teenager or even an adult and get burned out on caring for herself and stop. I really hope that by showing her things like this book, that she will take it to heart and remember how important it is to always take care of herself. I do a lot of her d care and my husband keeps saying she needs to be more independant and do it herself, she is old enough. I refuse because I think it just makes it more likely she will burn out or start skipping things because I wouldnt know.
     

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