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There is an excellent article published in the June issue of the New York Magazine written by author Kevin Baker who has Huntington's Disease in his family. It's probably one of the best I've read on what going through the genetic testing for HD can be for anyone........ranking right up there with Pultizer Price author Amy Harmon's New YorkTimes article, "Facing Life With a Lethal Gene" on NYA member Katie Moser!
Anyone considering genetic testing for HD might want to read this article.....or anyone who wants a better idea on what it is like for someone learning their at-risk for HD then goes through the genetic testing process. Besides Kevin's personal experiences, the article reflects on the important role genetic counseling plays. Since there isn't a "print" option for this article, I took the liberty of copying it into a Word document for anyone who would like a copy to share. Let me know if want a copy.
Mind Bomb
By Kevin Baker
Published Jun 8, 2008
Published Jun 8, 2008
In “Mind Bomb”, Kevin Baker wrestles with one of the most difficult questions of the DNA age: If one of your parents has a fatal genetic disease, should you or shouldn’t you get tested?
Some teasers from the article:
Huntington’s is a "profound" disease, one of the few neurological disorders that attacks nearly every area of the brain, says Steven Hersch, an associate professor of neurology at Harvard Medical School and Massachusetts General Hospital, and my mother’s neurologist. It affects the cerebral cortex, where thought, perception, and memory are stored. It also shrinks the basal ganglia, which serves as a sort of supercomputer for the rest of the brain, regulating almost everything from movement to the input and output of thoughts, feelings, emotions, behavior.
What Knowledge of Huntington's does to its victims
"Often the people who do best are those who can wall it off and go on with their lives," acknowledges Hersch. "It’s a very good approach in a lot of ways. The trick for people sometimes is to figure out when it’s in their best interest to drop the denial and gain knowledge that will help them."
How his mother's denial made the situation worse.
My mother’s denial tormented those of us who loved her. But now I found her desire to cling to the life she had known understandable, even admirable.
I was determined by this time to face the disease head-on. If my mother had made everything worse for herself by remaining in denial, I would throw it off. I would take whatever medications were necessary, volunteer for whatever experimental programs there must surely be. I convinced myself that this was a purely practical idea. Why go about looking for cures or ways to ameliorate the effects of the disease if I didn’t have the gene? Looking back now, I think my decision may have been more emotional than anything else, a desire to know this and be done with the uncertainty. I told myself I would be stronger than my mom, and take whatever I was given. Early in 2007, I set up an appointment at Columbia University’s HDSA Center for Excellence, located up in Washington Heights
The author goes through the testing process
The Columbia Center deals with every aspect of the disease, both for those already suffering from HD and for those at risk, and it endeavors to help patients through each stage. The center’s testing protocol, established and refined over the fifteen years since the Huntington’s gene was first identified, is actually an involved process, one that takes place over a few months—and is an infinitely better one than what my mother went through. One of its chief purposes was to slow me down—to let me think over what I was doing. As the center’s genetic counselor warned me at the start, "Once you know, you can’t not know."
I threw myself eagerly into the testing process, glad now to be doing this, to be confronting these phantom fears. The not knowing by now had become as bad as knowing the worst could possibly be, I told myself. I disavowed everything I had told people before. Best to look this fate in the eye, to see if it really was waiting for me.
The Columbia Center deals with every aspect of the disease, both for those already suffering from HD and for those at risk, and it endeavors to help patients through each stage. The center’s testing protocol, established and refined over the fifteen years since the Huntington’s gene was first identified, is actually an involved process, one that takes place over a few months—and is an infinitely better one than what my mother went through. One of its chief purposes was to slow me down—to let me think over what I was doing. As the center’s genetic counselor warned me at the start, "Once you know, you can’t not know."
I threw myself eagerly into the testing process, glad now to be doing this, to be confronting these phantom fears. The not knowing by now had become as bad as knowing the worst could possibly be, I told myself. I disavowed everything I had told people before. Best to look this fate in the eye, to see if it really was waiting for me.
It all made me think again. Was I engaging in a reckless act of bravado, moving into a realm that I was not psychologically or emotionally prepared for, just to show that I could do it?
His test results come back
"No matter what the result is," my genetic counselor warned me, "nobody is the same person they were when they walked in here."
I was pretty sure that if the results were negative I would be the same person I was in about five minutes. On the other hand, the 50-50 chance that I had the gene had already begun to unravel any peace of mind about my future. Bravado or not, I had to know. I had them draw the blood. They told me it would take two to four weeks for a result, depending on how crowded the lab was. No matter what the verdict was, I would have to come back to the clinic for the counselor to tell me in person.
Why Huntington's isn't truly a fatal diagnosis
And yet, inevitably, I would find myself filled with rage at times. I thought maybe it was the knowing that made all the difference. I joked about the old Woody Allen lines, from Love and Death: "How I got into this predicament I’ll never know … To be executed for a crime I never committed. Of course, isn’t all mankind in the same boat? Isn’t all mankind ultimately executed for a crime it never committed? The difference is that all men go eventually. But I go at six o’clock tomorrow morning." But I wasn’t going tomorrow morning.
Is it better to not be aware of your condition?
Which was better? To be past any awareness of your condition—or to be sinking slowly into it, still conscious? I wondered what the point was of trying to extend the longevity of the human body before we knew more about preserving the mind.
==========================
About Kevin Baker - http://www.kevinbaker.info/
His first novel, Sometimes You See It Coming, based loosely on the life of Ty Cobb, but set in the modern day, was published in hardcover by Crown in 1993 and in paperback by HarperPaperbacks in the spring of 2003. Dreamland, part of Baker’s New York‚ City of Fire trilogy was published by HarperCollins in 1999, and in paperback the following year. Paradise Alley was published by HarperCollins in 2002, and the third and final volume of the trilogy, Strivers Row, which was published in February, 2006. Kevin was the chief historical researcher on Harold Evans’ best–selling history, The American Century,published by Knopf in 1999. He currently writes the monthly “In the News” column for American Heritage magazine, and has been published in The New York Times, The Washington Post, The Chicago Tribune, The Los Angeles Times, The Frankfurter Rundschau, Harper’s magazine, Talk, and The Industry Standard, among other publications.
His first novel, Sometimes You See It Coming, based loosely on the life of Ty Cobb, but set in the modern day, was published in hardcover by Crown in 1993 and in paperback by HarperPaperbacks in the spring of 2003. Dreamland, part of Baker’s New York‚ City of Fire trilogy was published by HarperCollins in 1999, and in paperback the following year. Paradise Alley was published by HarperCollins in 2002, and the third and final volume of the trilogy, Strivers Row, which was published in February, 2006. Kevin was the chief historical researcher on Harold Evans’ best–selling history, The American Century,published by Knopf in 1999. He currently writes the monthly “In the News” column for American Heritage magazine, and has been published in The New York Times, The Washington Post, The Chicago Tribune, The Los Angeles Times, The Frankfurter Rundschau, Harper’s magazine, Talk, and The Industry Standard, among other publications.
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