- advertisement -

Upworthy Video

Discussion in 'Parents of Children with Type 1' started by mntgrl, Apr 15, 2015.

  1. mntgrl

    mntgrl Approved members

    Joined:
    Dec 5, 2014
    Messages:
    35
    On facebook, an Upworthy video/article came up that was from the New York Times (I think). It is the story of a teenage girl living with T1D. The video was very well produced and informative. The part that was worrisome and bothersome to me was when they talked about four of her teenage friends with T1D that had died over the past few years. We are new to all of this. Our daughter 7 year old daughter was diagnosed in December. She is doing well, numbers are obviously not always in range but we are in range a decent amount of time. The lows have gotten less scary as she is starting to recognize her lows and treat quickly. I guess my question to those that have been dealing with this for awhile, is there a large percentage of teens that die from this disease? Would it be because they stop managing it or is it for some other reason. Most of the people I have come in contact with, including our endo, assure us that our daughter will live a full and happy life. Hearing a story like the one of the video is very unsettling. Thanks for the input :)
     
  2. Brhodes

    Brhodes Approved members

    Joined:
    Nov 6, 2014
    Messages:
    28
    I'm not sure what the policy is about mentioning other sites, but there's a 10+ page discussion about the video on another large diabetes site. It includes responses from the parents of the girl.
     
  3. mntgrl

    mntgrl Approved members

    Joined:
    Dec 5, 2014
    Messages:
    35
    Thanks, I'd be very interested to read that~ I'll google T1D forums and hopefully find it.
     
  4. Megnyc

    Megnyc Approved members

    Joined:
    Nov 8, 2012
    Messages:
    1,373
    The vast, vast majority of people with type 1 will live long and healthy lives. There is an increased incidence of sudden death in type 1s. The best comparison I have seen puts the incidence at 16.7 per 100,000 person years in type 1s in comparison to 1.2 per 100,000 person-years in females and 2.9 per 100,000 person-years in males. Do note that the age ranges varied between the studies and there are a few reasons I am not necessarily sure one should make a direct comparison but this is the best information we have available at the current time. Here is a link to a comparison chart that includes the incidence density of sudden death in both type 1s and the general population.

    This is a thorough look at the stats. You can see related articles to the right as well.

    Now regarding the video, yes the girl (Grace) attended a diabetes camp and through that knew several teens who died. I am under the impression that not all of the deaths were from lows but I do not know for sure. However, as the numbers above show, this, while very sad, is incredibly rare.

    What is not mentioned in the video is the fact that life is not like that for the average teen with type 1. And for whatever reason, they choose to completely omit the availability of CGM. Which has been shown in study after study to reduce the risk of hypoglycemia and to drastically reduce the risk of severe hypoglycemia.

    So, to answer your question, no a lot of teens do not die from type 1. And there is technology available to further reduce the risks of nocturnal hypoglycemia.
     
  5. Mimikins

    Mimikins Approved members

    Joined:
    Jun 22, 2014
    Messages:
    203
    I assume the NYT documentary is Midnight, Three, & Six?

    I watched it a few months ago after seeing it on a few other diabetes forums I visit. I don't understand one thing about them though. The father posted a comment on the NYT article along the lines of "They decided not to look into CGM therapy, because it is too invasive for their daughter", but they talk about in the documentary how they are waiting for the artificial pancreas to arrive.

    Wouldn't the AP be more invasive than a pump + CGM combo? The AP uses two insulin pumps and a CGM (three things attached to the body), while a pump and GCM combo only has two things attached to a person.
     
  6. mntgrl

    mntgrl Approved members

    Joined:
    Dec 5, 2014
    Messages:
    35
    Thanks for the links and specific info regarding statistics. That is exactly what I was looking for. Very much appreciated!
     
  7. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Joined:
    Sep 23, 2007
    Messages:
    12,521
    I was appalled by that video and very gratified to see that the vast majority of commenters on the JDRF FB page and the NY Times were equally dismayed that their lives and their children/teen's lives were portrayed as so fear filled, so depressing, so limited. My kid has lived with Type 1 for 12.5 or her 17 years, those years have been busy, fun filled, normal years. She's a great student, plays sports, has traveled extensively (even to a very, very remote camp in South Africa). She manages her diabetes, has a low A1c and spends a minimal amount of time managing her disease and does so without any hysteria or hyperbole. Please do not take that video and a roadmap for your child's future, it is not.

    As to the sudden death part of your question, I'll refer you back to Meg's excellent post above.
     
  8. njswede

    njswede Approved members

    Joined:
    Feb 9, 2015
    Messages:
    385
    Kathy,

    My son is also 7 and he got diagnosed about the same time (end of Jan 2015). I've made the same reflection as you have. "How much more likely than his peers is he to die at a young age?". You can run the numbers forwards and backwards in your head and it's a scary thought that mortaility is increased almost ten-fold. Then again, a 99983/100000 chance of everything being fine is still pretty good odds.

    I decided to stop thinking in terms of mortality. Yes, it's increased but there's nothing I can do about the statistics. What I *can* do is to keep him as healthy and happy as possible. So I guess my advice to you is to stop worrying about the statistics. It will drive you crazy and it leads nowhere. Just keep doing the best you can (which I know you are) to manage your child's condition and fill her life with joy and love.
     
  9. sszyszkiewicz

    sszyszkiewicz Approved members

    Joined:
    Dec 24, 2013
    Messages:
    842
    A couple things Mimikins tangentially related to the original intent of this thread, but important nonetheless.

    Bionic pancreas is the system that will have insulin/glucagon/cgm. The lead researcher is Ed Damiano at Boston University. In the trials to date there have been two different pumps, one for insulin and one for glucagon. So yes thats three devices, however what the final product will look like nobody knows because it has not been built yet.


    Artificial Pancreas: lots of different researchers, but the system is Insulin/cgm only. So it can only lower your blood sugar, but depends on a lack of insulin to raise it.

    To the original poster:

    As for the statistics, a quote comes to mind, "There are three types of people in the world....liars, damn liars and statisticians." Risk is a strange thing. Did you know for example that ~3000 teens a year die in auto accidents in America, but we let them drive every day.

    http://www.cdc.gov/MotorVehicleSafety/Teen_Drivers/teendrivers_factsheet.html

    The cdc reports that 1.05 kids (<19 years old) per million died of diabetes in 2008/2009, down dramatically since the 1960's. With a teen population of say 100 million here in America we are looking at 100 deaths per year related to T1D

    http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6143a2.htm

    http://en.m.wikipedia.org/wiki/Demographics_of_the_United_States

    Unfortunately it does happen, and each one of those 100 is a terrible tragedy, and it just plain sucks our kids face that risk at all. However, take a good long look at that car in the driveway and you can put things in perspective. Risk is always tough to get your head around, but its never zero.

    We now live in a world where we can know the sugar levels most of the time with reasonable accuracy. In all of recorded human history that has only recently become true. The one thing I am grateful for is the fact that my child developed T1D relatively recently where the tech we have to level the playing field is leaps and bounds ahead of what they had even 5-10 years ago. As i type this response I am in Kansas, and I am keeping an eye on my sons numbers in New Jersey for crying out loud.

    The tech is only going to get better for all of us.

    So give your daughter an extra long hug tonight, not because she is in imminent danger, but because she is going to growup fast!
     
  10. dshull

    dshull Approved members

    Joined:
    Sep 24, 2012
    Messages:
    114
    My son was diagnosed at 7 and is now 10. If I had seen that video in the first year after he was diagnosed, it would have shattered me. I saw it when it first came out, and thought, "Wow, that looks nothing like our lives at all. Glad I'm living our life and not theirs." Shrugged it off and moved on. It is extraordinarily rare that I feel real fear when it comes to my son's diabetes. He has an awesome life, plays sports, has tons of friends (even sleeps over at some of their houses!) and recently started walking a mile to school with a friend. An endo nurse once told me that everyone's life has some inherent risks - riding in a car, flying in a plane, heck just walking around, bad things can happen. And that because he has T1D, yes his life has a slightly higher level of risk than other kids his age. But as Meg pointed out above, that risk is marginal at best. I don't know what message the parents were trying to send with that video, but it doesn't reflect my experience at all. And it saddens me that newly diagnosed families would see the video and think that was the norm.
     
  11. Megnyc

    Megnyc Approved members

    Joined:
    Nov 8, 2012
    Messages:
    1,373
    Ugh a bunch of kids from my high school are sharing the Upworthy article (with the video) on facebook. It is all over the place. Lovely :( Hopefully people who know me know that that is not how I live but I'm still not thrilled to see that being presented as "normal" life with diabetes.
     
  12. dpr

    dpr Approved members

    Joined:
    Dec 17, 2013
    Messages:
    399
    That movie is a disgrace to the Type 1 community. As if we're all waiting around for our children to die. It was obviously made with the intent of having shock factor for people who know nothing about Type 1. Yes people die from Type 1 complications and then again people get struck by lightning too.
     

Share This Page

- advertisement -

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
    Dismiss Notice