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How extreme is too extreme?

Discussion in 'Parents of Children with Type 1' started by diabetesgoddess, Jan 31, 2010.

  1. diabetesgoddess

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    I came across this article this morning and since my son is rapidly approaching his 10 year anniversary at the ripe old age of 12, it made me want to go and slice my wrists. I appreciate the reality and the need for people to understand. I am the queen of quoting the worst case scenerios and am not that opposed to the commercials that show the brutal realities of diabetes BUT, I would in no way shape or form want my son to see this. Again, I appreciate the frankness but I have to hope and pray that all of my hardwork for the past 10 years means that he will have at least another 20 years or more before worrying about the complications that this man speaks of.

    http://www.mercedsunstar.com/115/story/1292497.html

    Steve Cameron: The ugly truth about diabetes
     
  2. Becky Stevens mom

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    OMG:eek: This makes me wince and cringe and try to back away from the computer. Im not sure why this man felt the need to write this. Before people read this Id like them to read the book, " 50 secrets of the longest living people with diabetes" In there you can read about the Cleveland brothers, they both have had type 1 d for over 75 and 82 years respectively and have minor complications now. Im so very sorry for this man that wrote this article or should I say his sister but we have come so far in d care and are moving steadily in the right direction, towards a cure.
     
  3. diabetesgoddess

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    Honestly I am torn. I do know that even people with great control can still develop complications. As someone else mentioned to me, we don't know the quality of care she recieved but the fact that this began happening after 10 years??? Terrifying. More hair dye required :(
     
  4. Liongirl4

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    Wow, that article is pretty harsh!! And I think its the exception, not the rule. How old is the sister he talks about? How does she manage her diabetes??
    As a nurse, I have met several type 1's with complications. And if they are willing, I ask them questions..each person said he did not take care of his diabetes and thats why he has complications.
    With insulin pumps and CGM's and what we do today for our kids, I think they will be healthy for a long itme.
     
  5. Danielle2008

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    This is how I look at it...you never know what tomorrow brings.

    For all I know, I could walk in front of a bus tomorrow *knock on wood*.

    Life is full of unknowns.
     
  6. Toni

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    He is speaking honestly and truthfully about his own sister's experience with diabetes. He is doing our kids a service by bluntly educating the general public. Is this article something I would want a child with D to read? Absolutely not. But I do want the general public educated as to how horrible D can be. When asking for funding for children with D, you are competing for funds with St. Jude's, Shriners Children's hospitals -- many very worthy causes. The side effects of uncontrolled blood sugar should not be minimized. This article does mirror my sister's viewpoint. She does not think, as I do, that if you keep blood sugars controlled you can prevent most complications and minimize others. She has a more fatalistic attitude.
     
  7. StillMamamia

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    We don't know what other health issues his sister had, or how D was managed. I personally think this is a scare monger of an article. It doesn't really educate per se, it gives a very pessimistic outlook about diabetes, but it doesn't give all the facts behind the person's life, nor does it address the incredible advances made in D management tools.

    Yeah, I know...the complications are horrible, but IMO the article makes it seem like D is a one step in the grave type of thing, which I don't agree with at all.

    Like all things in life, we just never know, but for now, I choose optimism and will deal with any boulder in our paths when it comes around. And I'm not being naive about things.
     
  8. lotsoftots

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    ok I have to admit that after reading a little over half I skimmed through the rest...why..my sister and mother both are type 1's my sister at age 11 she is now 55 she does have some problems, but and this is a STRONG but my sister from the time she was a young adult didn't take care of herself in any shape or form I think she had a death wishtill she was in her late 30's. You would think she would have a whole host of problems, she has Rheumatoid arthritis but is still a bit stubborn to take meds she thinks meds are for wimps....sigh
    my mother was dxd later in life at the age of 30 she is now 72 she is in excellent health, she is active ( golfs 4 times a week she tells me for 18 holes her ave is 98..not sure if thast good I just smile and say oh thats good...lol) she has always eaten right ( mainly home cooked meals..that could be one of the main keys she knows what she is eating...lol)lives a normal life sure she goes off track when there is wedding, parties ect but she plans for eating late or more then the norm..its easier for her now because after having d for 40 years of shots she got a pump...she says its the best thing that has ever happened to her other then us kids...lol mom doesn't wear glasses, no kidney problems, never been hospitalized for anything d related..( only time I remember was a bladder suspension from having kids about 12 years ago)she still has all her fingers and toes..lol
    when if comes to d my mom is my role model!!! If I didn't know better first hand I might believe all these dome and gloom says and feel that my child is heading into a life of despair..I know she will have a long happy some what normal life..by some what I just mean having to remember to change a site, push those pump buttons, and poke herself often..but to her that's normal now ..Samantha and my mom have contest all the time to see who's numbers are the best or who can count carbs faster...that's normal for our house:D
     
  9. BrokenPancreas

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    This article really makes me mad.

    He never mentioned how old his sister is, the age she was dx, the insulin she was/is on.

    If he wanted to scare the heck out of people, well then, congratulations, good JOB!!!:mad:
     
  10. Toni

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    This family's experience should not be minimized by blaming the patient (assuming D was poorly controlled). They did not have cgms, maybe not even Lantus. She may have had good control but certainly she did not have the tools available to us to for optimal control of blood sugar. I think DN will live a long, healthy life. I cannot say for sure there will be no complications of any kind, 20 years down the road if D is not cured by then. I do expect there to be new tools available and I do expect there will be no complications, but no guarantees. Do not want people to assume complications are the result of poor control. Not always and maybe not normally in the past. We are lucky to be living in this time period. P.S. Makes me want to go home and slap that Dexcom back on her tush. Break needs to be over for sure!
     
    Last edited: Jan 31, 2010
  11. joy orz

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    Well if I had read this when Ava was newly diagnosed, or within the first year, it would have sent me off to the bathroom to cry for an hour.

    But now I feel like we have a better handle on things, I'm more optimistic, realistic and resigned to the fact that even with tight control, sometimes what will be will be.

    The reason I think this article is helpful is for the 74 friends and family members in my life, who don't understand why we're not sleeping at night and keep asking questions like..."Why doesn't she sleep in her own room yet?" "Why are you so worried about school next year?" and my favorite... "When do you think things are going to level out for her?"

    Most of the people in our lives still really have no idea what we are going through and why I am so obsessed with providing the best care possible. I'm hoping this article will shed a little light on things so my friends and family will stop thinking we're making a mountain out of a mole hill.
     
  12. AlisonKS

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    it's a reality for some, not all. It was for my aunt :(
     
  13. Darryl

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    Actually there is no evidence of that. No one with T1 had great control until a few years ago when CGM's came out. The only people with great control, until CGM's and pumps, were non-diabtetics, who don't have complications of diabetes.

    Still, fewer than 1% of the the "intensive control group" in the 30-year DCCT study, who have had pretty good control by today's standards (target A1C 6%, actual A1C just under 7%), have experienced the most serious complications as described in the article. It would have been helpful if the author of the article spoke about his sister's A1C's. We only know one person who has t1 for a long time - our pediatrician who was dx mor than 50 years ago. He seems to be doing just fine!
     
  14. Toni

    Toni Banned

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    Yes, this is true. Certainly for those always able to keep BS in nondiabetic range, I would expect very few complications, if any. DN has been exposed to high blood sugars though, even though most of her numbers are good. Some high numbers even with cgms (insulin slow). But high sugars, even a few hours a day, have the potential to cause some damage. So need to be more vigilant, less complacent, wake up and slap that Dex back on!
     
  15. Mikker

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    I have to agree. I think it is more likely that you can get away with loose bg control for a decade or so before you start developing serious complications, but in no way should be a concern for those that take their T1 seriously.

    Heck... my SIL's babies daddy was dx'd at 21, is now 26, and has the internal organs of an 90 year old. He's unable to eat solid foods without vomiting, and in the ER at least a couple of times a month. Every time he goes in, we never known if he'll be coming out.

    Of course, he has never even ATTEMPTED to maintain good bg levels. Even now... he refuses to test regularly or to take his insulin as he should. Does that mean all T1's only have 5 years until they develop serious complications?? That's a big whooping "Heck no!!"

    A couple of months back I was reading about a parent with a child that had been dx'd some 3 or 4 years prior (I don't recall exactly, but it hadn't been long) and was already developing some eye complications. Sad, yes... but then again... their child's a1c's had been between 10 and 14 since dx.

    Not that impeccable bg control will ensure a 0% chance of T1 related complications, but I think it's pretty safe to say that loose bg control year after year will just about guarantee complications.
     
  16. Christopher

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    I started reading the article and stopped when I got to this sentence:

    "The truth is that people who contract Type 1 diabetes face a miserable future, and assuming they live long enough, they face a brutal day-to-day battle as the disease gradually eats away at almost every vital organ."

    This statement completely discredited the author for me so I didn't even bother finishing the article and here is why:

    1. This person cannot tell us what "the truth" is. We all have different experiences and therefore we all have different "truths".

    2. The author makes a blanket statement about the future of all people who "contract" diabetes. Blanket statements like that are not only inaccurate but just go to show the ignorance of the person that utters them.

    3. The comment "assuming they live long enough" shows his ignorance about the disease itself and all the tools and technology we have at our disposal to manage this illness and assure that our children live long, healthy, and happy lives.

    I could probably dissect the rest of his article, but frankly I think it is a waste of my time. I think I would rather go spend a nice Sunday playing with my daughter, being positive that I am doing the best I can for her and just enjoy the life I have been given. :cwds:
     
    Last edited: Jan 31, 2010
  17. diabetesgoddess

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    While there may be no "evidence" to suggest that those with good control can develop complications, there sadly is accedotal evidence suggesting that this is the case.
    As for the wonderful tools that we have right now, they are only as good as the user and sadly too many people living with Type 1 diabetes do not have access to those tools.
    In my own house, I have many fears for my son because of diabetes combined with genetice predispositions to heart and kidney disease. Despite those genetic strikes as it were, I do my very best to ensure that his A1c continues to stay below the 7% noted in the DCCT. I work to teach him how to care for himself but sadly he has also seen that some people do die from this disease.

    Personally, diabetes is a disease that is hard work. It is a disease misunderstood by much of the public, including those that we work to educate in our own lives. I will still probably use the same grave statistics when trying to educate but I also will continue to show that with the right tools, education, and people living with diabetes can lead happy and productive lives.
     
  18. frizzyrazzy

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    well said. the author is a glass half empty sort of guy - that's for sure. I would also like to add, I have something in my signature: "the greater part of our happiness depends not on our circumstances, but on our disposition". And so, so what if there are complications? That doesn't doom my son to a miserable future. What will doom him to a miserable future is to believe that it's the case.
     
  19. Jake'sMama

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    definitely not an optimist, but I think what he's trying to do is get people to wake up - shock them into realizing type 1 is not just high blood pressure or other easily managed health issues.

    This hit me at a particularly low time...it seems so ...possible.
     
  20. frizzyrazzy

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    hang in there!!!! YOu're just finishing up your first year of diabetes and I felt that after getting past the nitty gritty, it was time to deal with the not so nice stuff. That's where you're at..right? Maybe it will help you, it helps me, I read Kerri's blog at six until me all the time. Maybe because she was a young child at dx and she's living a wildly full life, it just gives me hope that possible doesn't have to be probable. :)
     

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