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Cheating Destiny: Living with Diabetes

Apr 29, 2008

A few weeks ago we had an article by the endocrinologist Irl Hirsch. What many of you may not know is that his brother James, also has diabetes and has written a book about his and other folks experiences with the disease. Leigh Anne Bowen, University of Florida Doctor of Pharmacy Candidate, has reviewed his book Cheating Destiny: Living with Diabetes.

Leigh Anne BowenCheating Destiny:  Living with Diabetes
by James S. Hirsch

Reviewed by Leigh Anne Bowen, University of Florida Doctor of Pharmacy Candidate
Cheating Destiny:  Living with Diabetes is a well-written, forthright account of living with diabetes.  The author, James S. Hirsch, has had three decades of experience living with Type 1 diabetes.  He writes about the disease from the perspective of both a patient and a parent, as his son, Garrett was diagnosed at the age of three.  Hirsch’s brother, Irl, a well-respected endocrinologist and diabetologist, also has diabetes.
Hirsch uses his experience as a journalist to research the disease, its treatment, and advances in scientific research.  Diabetes was originally portrayed as a death sentence, with starvation diets used as a means to briefly prolong survival before the discovery of insulin.  He notes that the manufacture of insulin as a readily available product for diabetes patients was unfairly touted as a “cure” for the disease.  The evolution of glucose testing from merely tasting urine for the detection of sugar to modern blood glucose monitoring is also described.  Subsequently, patients have the ability to manage their diabetes through tight blood glucose control by frequently monitoring their blood glucose, limiting carbohydrate intake, and administering frequent insulin injections as indicated in the author’s interviews with the renowned diabetologist Dr. Richard K. Bernstein. 

In addition to traditional insulin injections, Hirsch describes the use of an insulin pump, which he uses today due to his episodes of hypoglycemia unawareness and the fact that he wrecked his vehicle during one such episode while his three-year-old son was a passenger in the car.  He poignantly describes a hypoglycemic episode as an unfortunate event sometimes occurring with tight blood glucose control:  “You feel like you’ve plunged into an ocean, your body is sinking, and you feel yourself falling farther and farther away from the surface.  You know if you keep descending, you’re going to run out of ‘air,’ and you may never come back up.  Your body may be pouring out sweat, but the main thing you feel is going deeper into the water, away from the surface, and a sense of desperation is coming over you.”  He also recounts his experience with a continuous glucose monitor as arduous.  Many other terms and aspects of diabetes and its management are described by the author, such as basal-bolus therapy, honeymoon phase, exercise, food, and the complications arising from the disease.

Breakthroughs in scientific research include islet cell transplants; however, as Hirsch notes, it is a “cure” worse than the disease of diabetes itself, as a lifetime of immunosuppression is required for such treatment.  Other investigative works involve the use of stem cells, a controversial issue, which is still undergoing research.  Of interest is the research of Dr. Denise Faustman, who has successfully reversed autoimmune diabetes and restored sufficient beta cell mass in diabetic NOD mice.  According to her website, www.faustmanlab.org, that project is now being translated into human clinical trials.  Although encouraging, there has been much antagonism between the various diabetes scientific investigators to discredit the other, as described in the author’s research.

A major area of concern to Hirsch is the lack of patient education provided by clinicians regarding diabetes.  It is not viewed as profitable, generally, by the primary care providers and the insurance companies to expend physicians’ time to provide the education necessary to enable patients with diabetes to successfully manage their own disease.  Also, he notes that many physicians merely lack the training to manage diabetes, since medical school tends to teach the treatment of the disease to students in only one day, exclusive of any electives.  Thus, the burden of educating patients should be shifted to those medical professionals who can more efficiently provide direct patient care, such as diabetes educators, nurses, nutritionists, and pharmacists.  Pharmacists, as stated by Hirsch, are possibly the most underused resource for diabetes education, as patients have more encounters with them than their physicians. 

Also included in the book are details of the many efforts employed to increase awareness of diabetes and its complications and to raise money for diabetes research.  Early in the fundraising efforts, such as with JDRF, the goal of research was in finding a “cure” for diabetes.  Still today, JDRF states that its mission is to find a cure for diabetes and its complications; the ADA’s mission, too, is to find a cure for diabetes but also to prevent it.  To state that there is a cure for diabetes in the near future is misleading, according to the author, and can lead to false hopes and thus despair in those who so readily believed in such.  The prevention of diabetes itself is also a focus of research, and Hirsch notes that it may be possible through the modulation of the immune response to prevent an autoimmune attack of the pancreas.  However, the prevention of complications of diabetes is, of course, possible through tight blood glucose control.

Depicted throughout the book are real-life accounts of people with diabetes.  Hirsch begins with the diagnosis of his son, and he continues with his own role as the parent of a child with diabetes.  He also has many first-person accounts with himself as the patient.  The stories of peoples’ experiences with diabetes span from the time before the discovery of insulin to the first uses of insulin and beyond.  They are heartfelt and inspiring tales of courage that encompass a range of emotions such as guilt, anger, fear, shame, and embarrassment to hope, faith, acceptance, love, and trust.  Hirsch relays his own guilt and sadness with the perceived loss of innocence experienced by his three-year-old son, since Garrett, too, must forever live with diabetes. 

Cheating Destiny:  Living with Diabetes provides realistic insight into the life of a person with diabetes.  It explores the emotional burden experienced from the time of diagnosis onward.  And with a touch of cynicism, the physical and psychological aspects of managing diabetes are explored in depth.  This is an essential read that can help to empower those with diabetes to take responsibility to more closely manage their disease.  The book voices the strong opinion that patients should no longer accept blame from the medical society for their disease of diabetes.  As Hirsch explains what life is like with diabetes, he states that it “[is] a constant struggle to always stay one step ahead of it, to prevent complications and death, to cheat destiny.”  I highly recommend that anyone interested in diabetes read this expressive, informative book, including patients, caregivers, friends, relatives, and medical professionals.