It was 1988, my first day at work as a psychologist at the Joslin Diabetes Center in Boston. I had been asked to see Josh, a nice young fellow with type 1 diabetes. When I asked Josh how I could be of help, he said, “Today is my 30th birthday. Now what?”
As a young psychologist and one that was relatively new to the world of diabetes, I was puzzled. People came to see me for depression, anxiety, and relationship problems, but never because of birthdays. What was going on? After a lengthy conversation, Josh explained that when he was diagnosed with T1D at age 14, his endocrinologist told him that he would probably not live beyond the age of 30. John had lived with that frightening, depressing story for 16 long years and now he was 30 years old and apparently in good health. He was somewhat shocked. Could this be true? Did he really have a life ahead of him? What to do now?
There were many people like Josh back then, all given horrible, sobering predictions of an early death. Of course, things have changed. I doubt that any physician would say something like this to a newly diagnosed T1D nowadays. There is a still scary vibe out there; this sense that having T1D is going to get you, that blindness, amputations and dialysis are just inevitable. Maybe you’ve had a doctor warn you that these kinds of terrible complications will happen if you don’t start taking better care of yourself, or, perhaps you have known people who have been hit hard by the T1D. You may hear announcements from the Centers for Disease Control and Prevention, like: “Diabetes is the leading cause of new cases of blindness, kidney failure, and amputations of feet and legs…”
Indeed, scary stuff.
If you hear enough stories it is easy to think that this will be your fate as well. Once you become convinced that complications are inevitable, that there is nothing you can do to stop them, who wouldn’t get discouraged about their own diabetes care? Why even bother to try?
But wait a minute.
My colleagues and I would argue that a careful reading of the scientific literature leads to the conclusion that it is poorly controlled diabetes that leads to long-term complications. Well-managed diabetes is the leading cause of… nothing! With good 21st century care, odds are good you can live a long, healthy life with T1D. That’s the whole point of T1D treatment! Of course, no guarantees are possible, but the evidence is strong.
As you hopefully know, your risk of running into long-term T1D complications is dramatically lowered when you can keep your blood glucose, blood pressure and cholesterol levels in a safe range. Here are a few tidbits to remember:
- The Joslin Diabetes Center, gives out medals each year to people who have been living with T1D for fifty years or longer. In the past twenty years or so, the number of medals awarded each has more than tripled. Now Joslin is handing out 75-year medals and those numbers are growing as well.
- Another big study recently looked at the incidence of severe retinopathy after 20 years of T1D. For those people diagnosed before 1980, about 1/3 of them developed serious eye problems after 20 years but for T1D’s diagnosed after 1985, the incidence was only 6%!
- After 30 years of T1D, participants in the intensive arm of the famed Diabetes Control and Complications Trial (they maintained an A1C of about 7.1% for four years) look pretty darned good. Only about 1% of participants have run into severe vision loss, amputations, or kidney dialysis. Of course, that’s 1% too many. But still, that’s amazing.
There are dozens of other studies that could be mentioned all highlighting the good news. Yes, T1D is a serious disease but it is the 21st century and we understand that you are not doomed. Bad things can still happen, often for genetic reasons that we don’t yet understand, but the growing body of evidence is reassuring.
If I had the chance to meet someone like Josh today I would expect to tell him that if he continues to take good care of his diabetes his long-term health and life expectancy is likely to be pretty darned good, probably no different from mine or anyone else’s without T1D. He should plan to live a long and healthy life.
Want to find out more about all of this new evidence? See if you can get your hands on a wonderful article by E.A.M. Gale, called “How to Survive Diabetes”, which appeared in the medical journal, Diabetologia, Volume 52, p. 559-567, in 2009. Perhaps a tough read for the non-professional, but worth it!
William H. Polonsky, PhD, CDE
Associate Clinical Professor, University of California, San Diego