So I didn't write the Great American Diabetes Narrative, nope. But what I dreamed of doing was offering a clear instruction manual on how to manage your own health with diabetes -- the kind of book I certainly could have used but couldn't find when I was diagnosed.
Author James Hirsch writes of a growing divide between diabetic haves and have-nots -- a world in which "an elite corps of highly motivated, educated, and financially secure (patients) are flourishing... compared to the nearly 90 percent (of diabetics in America) who fail to meet basic goals for blood glucose, blood pressure, and cholesterol levels."
I realize, with a striking sense of guilt, that I belong to the first group. But how can patients like myself use their skills and resources to reach out and help "the other half"?
Lucky for me, I ran into Dr. Richard Jackson, who's spent two-and-a-half decades at the Joslin Diabetes Center in Boston working with the 90 percent. A sickening number of patients already have developed diabetic complications by the time they manage to visit the Joslin. This damage is avoidable. If only these people had gained a better sense of how to manage their health early on...
Light bulb on! He, as the experienced clinician, and I, as the down-to-Earth "voice of the patient" reporter, might just be the perfect pair to put together the kind of hands-on guide that teaches people the basics, and hopefully motivates them at the same time. A major premise of the book is that YOUR ACTIONS MATTER, NOT JUST YOUR DOCTOR'S. We over-achieving Type 1s take this for granted. But inertia -- by both doctors and patients -- is a huge contributor to the growing instance of diabetic complications in this country.
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This is shocking in itself, btw. Research shows that with today's advanced treatment options, complications to the eyes, heart, nerves, and kidneys can be greatly minimized, if not avoided altogether, yet "their incidence is only growing," Hirsch reports. How can this be?
A combination of flaws in the healthcare system and misinformation/lack of education is at work. In his book, Hirsch tells the story of diabetes advocate Florene Linnen, whose black community in Georgetown County, South Carolina, is literally being wiped out by diabetes. Amputations, blindness, and death are rampant. Yet no medical professional has ever explained the seriousness of the disease to them. When Linnen's own mother was diagnosed, the nurse simply mentioned that her blood sugar was "just a little high." "How high?" asked Linnen. 382, it turns out!! Allowed to go on like this, Linnen's mother would have been next in line for amputations, blindness, and death.
Only by educating herself about the health risks and critical diagnostic tests did Linnen pull herself out of the abyss: she was over 200 pounds, exhausted and achy when she first decided to take a stand.
Our aim is to help people like Linnen. Apparently when she first attended a diabetes workshop in 1997, a speaker asked, "What were your numbers the last time you saw your doctor?" Linnen had no idea what he was even talking about, Hirsch reports.
Hard to believe that despite having had diabetes for 14 years (since 1983), no one had briefed her on the 5 essential health tests: A1c, lipids, blood pressure, microalbumin, and eye exam. How can you manage your health when you have no idea where your health even stands?! Know Your Numbers, Outlive Your Diabetes may just be the best $11 ever invested on a person with diabetes. That is Our Great Hope, anyway.