University of California San Francisco Pediatric Diabetes Symposium (San Francisco, CA, March 3, 2007)
SPECIAL CONFERENCE PERSPECTIVE
James S. Hirsch on the Human Drama of Diabetes
The UCSF Pediatric Diabetes Symposium focuses on the latest in therapy for children with diabetes. This fun event caters to families with a diabetic child, or children, and even provides a "Kids Kamp. Our own James Hirsch was there from Boston and gave a moving talk. He writes below about the event and what he said.
I’m not a scientist or a researcher, but I’ve had type 1 diabetes for 30 years, my six-year-old son’s had diabetes for almost three years, and I’ve written a book on the subject (Cheating Destiny), so I guess that qualified me to speak at the University of California San Francisco Pediatric Diabetes Symposium on March 3. Sponsored in part by the JDRF, the event drew several hundred parents and their children (who played games and other activities).
My presentation was one of several more scientific talks, including those that discussed efforts to alter the progression of type 1 diabetes (we aren’t quite there yet) and the push for continuous glucose sensors in children (ditto).
But I suspect all of the speakers were upstaged by a group of canines who were promoting an unusual idea for diabetes care (www.dogs4diabetics.com). The dogs have been trained to “sniff out” low blood sugars (people secrete something in the process) and then alert the patient, or whoever else is around, to the problem. That’s certainly thinking outside the box, or at least the kennel, though it appears that the animals themselves were being trained as seeing-eye dogs but didn’t make the cut. Why do we always get the flunkies?
Sorry, I digress.
Here is a summary of my remarks to the parents.
My 30 years with diabetes recalls a speech I heard – as a teenager – when I was a counselor at a camp for diabetic children. A gentleman who was invited told us that he had had diabetes for 30 years – he would have been diagnosed in the late 1940s – and he said that with all of the improvements in care, “you’re quite lucky to have diabetes today.”
Oddly enough, my friends and I didn’t feel so lucky to have diabetes.
Three decades later, diabetes care is dramatically better, but I’m not going to tell anyone how lucky they are to have the disease – even more so if their children have it. I know the heartbreak, the frustration, the guilt.
What I can say is that I don’t believe my son’s life will be cut short by diabetes or impaired by complications, and my confidence is based on a real-world example. My older brother, Irl, has had type 1 for about 45 years (when my sister’s cat got diabetes a couple years ago, her son said, “Well, I guess it runs in the family.”). Irl is now one of the country’s leading diabetologists, and since the late 1980s, he’s run a diabetes clinic in Seattle for the University of Washington. Three attributes distinguish his clinic: a team approach of providers (endocrinologist, nurse educator, nutritionist, etc.); emphasis on taking fast-acting insulin before each meal (now known as “basal-bolus therapy” but virtually unheard of in the late 1980s); and the use of technology (downloading meters to evaluate glycemic variation).
The bottom line is this: Irl sees virtually no complications, and the problems that do occur typically arise from non-diabetic conditions (eating disorders, depression, etc.)
Obviously, Irl’s clinic is an aberration, but his experience tells us that long, healthy lives are quite possible with personal dedication combined with excellent medical care.
What I fear in the age of “intensive diabetes management” (a phrase that didn’t exist when I was diagnosed) is that patients feel overburdened and overwhelmed, they have unrealistic expectations about glycemic perfection, they get frustrated, they have some bad experiences (a high A1c, a bad low, an early sign of complications) – and they just give up. A man with diabetes who had a hypoglycemic episode while umpiring a soft ball game said this: “The problem with diabetes is that all of your failures are public, and all of your victories are private.”
If your child has diabetes, your goal should be to reward the victories, provide encouragement after the failures, and to prevent a downward spiral of apathy. Yes, we want tight control, but we also want an emotionally healthy child.
This is the advice I’m going to give my own son: “Be realistic. You’re going to have ups and downs, you’re going to have good days and bad days. When you have a good day, take credit for it. When you have a bad day, blame the disease and vow to make better decisions tomorrow.”
And if that doesn’t work he can always get a dog . . . and we’ll name him Hypo.
James S. Hirsch