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11 Responses

  1. Michelle
    Michelle July 1, 2008 at 12:45 pm | | Reply

    How to make people realize this is a dangerous disease without making PWD appear to be disabled is such fine line to walk. On one hand, I want to believe that my child is perfectly normal and I spend a lot of time telling those around us “he’s totally normal, he can do everything, he can eat everything, he can participate in anything.” yet on the other hand, I know he’s got a chronic, life threatening disease for which we need medical intervention, lots of medical devices, and lots of school accomodations. Yet because we do such a great job functioning with diabetes we get very little support and understanding from the general public.

  2. tmana
    tmana July 1, 2008 at 1:01 pm | | Reply

    The insidious things are: (1) that most people who die from complications of diabetes are listed as dying of the acutely fatal issue (heart attack = heart disease, stroke = cardiovascular disease, senile dementia = Alzheimer’s disease), (2) we don’t see diabetes as a causal factor of its complications (you see someone with an artificial leg, do you automatically think she lost it to diabetes, or to cancer or a car accident?), (3) we blame (T2, and by extension LADA) on the individual’s food choices, rather than on a broken nutrition supply system.

    Well-Controlled Diabetes Is Invisible. This makes it most likely to be ignored by medical research foundations and the general media. As many of us have complained in online communities (dLife, DiabeticConnect, TuDiabetes, DiabeticRockstar, etc.), many of the medical professionals available for our care providers are under-educated about diabetes as well.

    Type 2 Diabetes can be patient-controlled by intensive lifestyle management (ILM) in some cases. While those of us who have succeeded at this may stand out as role models for the T2 community, our successes may serve to disincentivize improvements in medical intervention for the rest of the T2 community, and by insinuation, the T1 and LADA communities.

    I recently noted the lack of readily-available information and training on dealing with diabetes-based medical emergencies, and the lack of media interest in hosting information on diabetes-friendly diet planning in my Tudiabetes blog.

  3. mollyjade
    mollyjade July 1, 2008 at 2:27 pm | | Reply

    Those comments on the Well blog post are frightening. Apparently everyone knows the secret to curing/preventing/treating diabetes and everyone else is wrong.

    It is a hard line to walk in telling people about diabetes’s impact. On the one hand, I lead a pretty normal life. On the other hand, diabetes impacts everything in my life from what shoes I put on in the morning to where I work.

  4. Emmaspapa
    Emmaspapa July 1, 2008 at 2:43 pm | | Reply

    Dr. Buse really does have a point. As the grandparent and father of T1′s I know how dangerous this disease really is and spend a lot of time trying to educate others. My son and granddaughter both, look to be the picture of health, and for the most part they are; what people do not understand is what it takes for them to stay controlled. Friends of T1′s and even close relatives are, in too many cases, unaware of the danger of this terrible disease.

    http://dotinggrandparents.blogspot.com/2008/05/dream-as-metaphor.html

    Please copy/paste the link above and pass it along to those with their heads in the sand.

  5. Hans
    Hans July 1, 2008 at 3:41 pm | | Reply

    [url=http://www.usatoday.com/news/health/2007-11-11-diabetes-cover_N.htm]here[/url] I find John Buse quoted stating in 2007:

    [quote]A disease with no respect
    Buse, president of the American Diabetes Association, says it wasn’t so long ago that diabetes treatments weren’t much of a priority in the medical community.
    “It was the Rodney Dangerfield of human disorders,” Buse says. “Ten or 15 years ago at ADA, we were talking about what message we want to convey (to the public), and a decision was made not to convey the message that diabetes was serious,” because there was so little doctors could do to prevent complications.
    “It would have been like saying: ‘Bad news, your house is on fire, and worse, there’s no water for miles,’ ” he says. Until 1993, it wasn’t clear that lowering blood sugar prevented or delayed complications, and it’s only within the past decade that doctors learned that managing blood pressure and cholesterol reduced complications, he says. “Until 1995, there had been no substantial advance in drug management of diabetes since the 1950s.”[/quote]
    I repeat:
    “Ten or 15 years ago at ADA, we were talking about what message we want to convey (to the public), and a decision was made not to convey the message that diabetes was serious,”…
    So who’s createt that dangerous misconception of Diabetes?

  6. Beth Wieder
    Beth Wieder July 1, 2008 at 5:05 pm | | Reply

    I can’t tell you the number of friends who said to me, “At least it’s not cancer” when my son was diagnosed. I was horrified at the thought of comparing them. But a friend whose child had survived childhood cancer blurted out to me one day, “I think diabetes is harder than cancer because it NEVER stops.” She’s right in a way, but the unbeatable plus side is that we do have a degree of control over the disease.

    I think one thing diabetes does that is critically underrecognized is how it divides people into two camps — those with extraordinary will power, and those without. Those with the will power find a way to live their lives to the fullest despite the challenge of diabetes, and even become stronger, more accomplished people because of it. The power to say “No” to things that tempt you, over and over and over again,’ requires almost superhuman self-control.

    I have been awed by my 10-year-old’s ability to say “No” to things he wants but knows are bad for him. He is athletic and healthy, and he owes most of it to his own excellent decision-making, not anything his parents do.

  7. Gina
    Gina July 1, 2008 at 7:45 pm | | Reply

    its so funny you posted this because i saw it as well and i emailed the author directly lets see if she writes me back.

  8. Bennet
    Bennet July 2, 2008 at 5:39 am | | Reply

    Would this be the same ADA that has a half million a year in pay and perks executive saying diabetes doesn’t need blood testing, that pumps and CGMs a w waste of resources? Or did the fire Mr Kahn?

    Hans points out this is nothing new ADA made the choice to be Rodney.

    Maybe the respect needs to start with us evaluating the “Institutions” that presume to speak for those of us who’s lives are effected by diabetes.

    I don’t make comparisons to other’s conditions. I know my kids are working hard to do as well as they can. That is our row to hoe. I also know my good friend and classmate back to Pre School lost her daughter to cancer. Like Beth my friend understands the stress D put on us. I the other hand can only begin to appreciate what losing a child is like.

  9. Freddie Jaye
    Freddie Jaye July 2, 2008 at 11:28 am | | Reply

    I’ve had diabetes for 40 years, and it has hammered me. Lost a leg, several other toes, my kidneys (had a transplant five years ago– YAY!). I’ve been through dialysis, bilateral vitrectomies and more than enough laser surgery .

    Yet most people don’t always realize that it never goes away; it’s part of your consciousness and physicality, around the clock.

    One vascular surgeon I know told me he’d rather have cancer: “At least you have a good cure rate with surgery, chemo, and radiation. Diabetes just keeps after you.” And he wasn’t being insensitive — just practical and honest.

    Diabetes treatment isn’t flashy and dramatic. You “just” watch what you eat and drink, test your sugar with a tiny monitor, and surreptitiously inject (or pump) insulin. No walkers, no special chairs, no weekly hookups to expensive machinery…it just isn’t “glamorous.”

    Patients in denial? Who can blame them? Diabetes isn’t like a heart attack that drops you in your tracks. It isn’t like a full-blown tumor that suddenly appears on an X-ray, and grows constantly. It really is insidious — constantly doing its tiny bits of damage, over and over, until an organ starts to fail, or something gets amputated.

    Want to get things kick-started? Convince Oprah to do a week on diabetes treatments, complications, and other topics, and people’s awareness level will go through the roof.

  10. Trusted.MD Network
    Trusted.MD Network July 14, 2008 at 10:14 pm |

    23 Days Until 23…

    There are only 23 more days until my 23rd birthday on August 6.
    The years of exciting milestone birthdays are over, sadly, so I’m not exactly on pins and needles about it. I’m looking forward to August because that means I’ll be living in Hoboken…

  11. LTennison
    LTennison October 23, 2010 at 10:17 am | | Reply

    A diagnosis of Diabetes can often be devastating and surreal, even when you see it coming. And with it comes a period of time simular to that of the grieving process, which can vary in length depending on the individual. I think the patient cycles through different stages….denial, rebellion, anger, depression, uncontrolled emotions, then comes compliance, and spurts of motivation, etc…It doesn’t become apparent right away either, that it isn’t a diagnosis for the patient alone, it involves and encompasses everyone in that patient’s life. The ramifications trickle down to effect everyone in one way or another…family, friends, co-workers, employers, and so on. There are so many varibles with this particular disorder that effect the metabolism and therefore blood sugar levels that it can easily become overwhelming and frustrating. It is not always simply a matter of following the standard protocol of today (may change in a year or two with growing knowledge) What is successful for one person, doesn’t have the same results for the next. It is a forced lifestyle change which, granted, is for the best, but it is a daily obsession filled with making the right choices over and over again. And one cannot afford to “fall off the wagon” without expecting it to catch up with you eventually. As one earlier mentioned…this is a viciously, silent, and deadly killer, thriving on slow and steady suffering. Of course, we are lucky in the fact that we do have a measure of control…our lifestyle and disciplined abilities. But many of these additional factors are too often overlooked or ignored. Such as depression and an eventual sense of being a failure and a burden to those around us. It is also hard to argue against the fact that the pharmacetical companies DO NOT have diabetic’s best interest at heart. They understandable have a lot (money) to loose. In the end, when the dust settles, it’s up to each individual diabetic to take charge to the best of thier ability in managing thier own level of care. Although, I think we should and can expect a certain amount of support and concern from our own network of family, friends, and health care providers, but ultimately the burden of responsibility lies within ourselves.
    Sorry…apparently I seem to be rambling. Thanks for your patience!

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