Wednesday, December 7, 2011

Cheating Destiny - Book Review

I just finished reading Cheating Destiny by James S. Hirsch. It's an honest, and quite thorough look at the past, present, and future of life with Diabetes. He starts by talking about finding out that his young son has it and how hard that whole event is. James himself has also had the disease his whole life. He then goes on to talk about the history of diabetes research, the invention of insulin, and then takes a thorough look at the research that is being done today. He also talks about what it's like to live with Diabetes day to day both as a parent and as an adult living with the disease. Toward then end there is an honest discussion about whether we will ever have a "cure" and a heartfelt discussion about his hopes for his son's future.

I am really glad I read this book. Not only was it a concise and very readable compilation of the research that has been and is being done in the field, it also doesn't sugar coat things. Because he is a parent, he wants the same answers I do, and he asked the same kinds of questions that I would have asked. In being honest with himself, I got honest answers too - some that I really didn't want to hear, but which I think I deep down feel are true:

"I had already planned to visit or interview top scientists in the field, but now my inquiries had less to do with the book than with my son. Why isn't there a cure? How far away are you? What in God's name have you people been doing for the past thirty years? . . . "I was forced to recognize that Garret had no chance of being cured during his childhood or well beyond. Indeed I could not find a single clinical trial anywhere in the world to cure type 1 diabetes. And even if one were to succeed, it would take at least 10 years before any treatment would be available. While we can improve ways to maintain normal glycemia, we have not, and perhaps never will, resolve the underlying immunilogical defect: the disease itself."

And then from the ADA president:  "The more we learn, the further we are from a generic cure."

From a professor and 50 yr researcher of diabetes at the Medical University of South Carolina, "We can't change genes.There is no cure for a genetic defect unless you want to reengineer children. We would settle for optimal management."
 From Joslin's Ronald Kahn, "If you give an antibiotic for pneumonia and the pneumonia completely goes away, then I've cured the pneumonia, but most of the things we talk about with type 1 diabetes don't make the intrinsic disease go away. In fact, the only way we'll make the intrinsic disease go away is more in the area of prevention than cure."

With some of the recent discussion that has gone on about whether JDRF is really still looking for a cure or whether they are just researching prevention and the artificial pancreas, I have been thinking a lot lately about whether there ever will really be a cure. I know we all want to hold out hope. I know that diabetes was a death sentence, and now we have insulin, so maybe what seems impossible is possible. I do believe maybe some day they will be able to prevent it. Or maybe they will be able to stop it in it's tracks if they catch it in the very early stages. I don't know. But how can they cure it when it has already done so much damage? The beta cells have been destroyed. The pancreas doesn't work anymore.  If there is a genetic component, then how can they "cure" that? You can't cure green eyes.  I am hopeful that Dr. Faustman has some answers. That she has found a way that others have not. But I still have a doubt. Maybe it's just some thread we're holding onto. We walk, we raise money. We hope.  But maybe we really just need to be honest and realize that any kind of working cure, if it is even possible, which I'm not convinced it is, is a long long way away. Josh will be grown (I hope).

Does that mean I stop walking, stop raising money, stop hoping. No.  I still do all that because I want a better life for him. I want for gosh sakes one damn site that continuously monitors his blood sugar, gives me BG numbers without me needing to prick his fingers all day, gives him insulin as needed, and doesn't need to be changed every two days. I don't think that's too much to ask in a time when I can be in the middle of the woods and use my cell phone to google what's on tv tonight, or when we can give people artificial hearts and cochlear implants, or I can look on my computer at a satellite image of my home taken from space.  I mean come on people! Help us out a little! 
I guess my hope for a cure is still there, it's just more realistic now, and I appreciate this book for helping me articulate what I already knew.

I hope all of that downer talk doesn't keep you from reading this book. It is actually overall a positive book about real life with diabetes. It's an easy read and it's well written. I really enjoyed it and I think you will too!