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What do you want people to know about type 1 diabetes?

Discussion in 'Parents of Children with Type 1' started by Mama2H, Jul 31, 2008.

  1. Mama2H

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    If you read my other recent thread about our local paper you will see that they are now trying to make things right :D I would love to get some of your answers to this question that the reporter is asking for the article she is going to do. Sooooooooooooo

    What do YOU want people to know about Type 1 Diabetes?
     
  2. KelliTwins

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    I want people to know that Greg won't just outgrow this. I hear that so often! "Don't worry...he'll outgrow it in a few years!" It makes me insane!!!
     
  3. mommyofAx4

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    that it is a autoimmune disease that nothing you do can prevent it or delay its onset no matter how much you exercise or eat right. also i get tired of people saying oh she will grow out of it so i think people need to know this is a life long disease that our children will have until a cure is found.
     
  4. Pam H

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    I wish people knew that this is more than a "lifestyle change".
     
  5. Denise

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    oooh I dunno..maybe that Diabetics CAN eat sugar and that it's not caused by anything the EAT! :eek: Ya, you picked a great day to ask this one!:(
     
  6. miss_behave

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    That we can eat whatever we want (yes, even sugar! :rolleyes:) as long as we dose insulin for it. That its not some easy peasy insignificant thing to deal with, that its unpredictable and hard to manage.
     
  7. malyssa

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    Hmm. If I had to pick one thing for people to know about type 1, it would be that type 1 is a totally different disease from type 2, and shouldnt really be compared to one another. I'd have to say, that is the one thing that annoys me the most...when people say things like; "Well, exercise more, or eat less." or the famous one, "my grandma/grandpa has that, but they're overweight." or something like that. It makes me pretty crazy. :eek:
     
  8. mommyofAx4

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    also wanted to add i think that people dont take it seriously they think well just dont give her sugar anymore and she will be fine people need to know its so much more that every day is a struggle for these kids.that it changes all the time.also it is alot more that these kids go through then taking a pill every day its not only physical but also emotional
     
  9. TheFormerLantusFiend

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    -You can be diagnosed at any age. 2 weeks or 50 years.
    -Skinnier is not healthier.
     
  10. Mama2H

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    *Just because my child looks healthy doesn't mean that her disease is easy to manage, it takes a lot of work to keep her healthy
    *My child can eat anything that anyone else can, instead of her body making insulin like the other kids we must inject it with either needles or an insulin pump.
     
  11. buggle

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    I don't know what I want them to know. I guess I want them to realize what a serious and dangerous condition this is, yet I don't want them showing pity to my kid or having lower expectations for him.

    I haven't run into people who don't know it's an autoimmune disease yet, so I haven't had to hear the comments about eating too much sugar or bad diet or anything. I do think that people have no clue (I didn't before) about the huge effect this has on the life of the child and their family and how intense this is. I think I'd like people who are close to me to get what a heart-breaking thing this is for parents to deal with. I think they underplay how serious it is and what it takes to manage it.
     
  12. OSUMom

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    Insulin is not a cure. It's life support.
     
  13. Treysmom

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    Its probably already been said.

    I want people to know type 1 is not easy to manage. It can be up and down one day and great the next.
    24/7 managing
     
  14. StillMamamia

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    I would like them to know:

    what it is (auto-immune disease)
    how it happens (beta cell destruction)
    what it means (insulin for life)
    what the pancreas is
    what is glucose and why it is important
    how insulin is given (MDI and pump)
    the average of daily blood glucose tests and how it's done
    what the symptoms are
    what DKA is
    what are the signs of a low & what to do
    what are the signs of a high & what to do
    what is glucagon & when do you give it
    the difference in earlier d-management vs today's
    what carbohydrates are and how they are processed
    what foods are 'carbs'
    misconceptions about the disease

    I would also ask them to mention that diabetes is not just Type 1, but Type 2, Type 1.5, monogenic, etc, and that they should dedicate other future articles to each of these.
     
  15. mom2two

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    Looks like about everything has been covered. What I would like people to know about Type 1 is that it is a very serious disease. I've encountered some people who just think "oh just diabetes". I didn't actually GET IT until it entered our lives so I am so glad you are taking the time to do this article!
     
  16. Lee

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    I think what everyone else has said - with reinforcement on how much work it is to keep our kids healthy...
     
  17. wilowndmomof3

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    I want people to know that they didn't get it from the way I fed them.

    It is a serious condition that can be life threatening if not taken care of.

    I am not an over protective wife and mom, I just want them around for a really really long time :D
     
  18. TerpSteph

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    I think this is spot on and would have the most effect on educating people who don't understand what Type 1 D is. The only thing I would add is how expensive it is to manage diabetes effectively. We are fortunate to have good insurance, but my heart breaks every time I read a post from someone who is struggling to pay for supplies. I also worry what will happen when my son is too old to be covered on our policy.
     
  19. purplewowies

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    Hmm...

    I WANT PEOPLE TO KNOW KELLY McKAY WAS COMPLETELY WRONG ABOUT TYPE 1 DIABETES!!!!!!! (yes I'm mad)
     
  20. Mom2Jordan

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    I want people to know that I have a healthy, happy child. Diabetes means we make a lot of lifestyle changes and higher maintenance but at the bottom of it all she is still healthy and happy and a normal kid. People don't always need to feel 'sorry'. She's fabulous. ;)
     

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