What Would You Do?
dd March 19th, 2007
If you happened to read this story in the Sunday NY Times, you must have started thinking about the question I’m going to pose. To recap the story for those who have not seen it: A 23 year old woman has known since her teen years that her grandfather died an awful death due to Huntington’s disease (HD), a fairly rare but genetic brain disorder which ravages the mind and body. (Probably the most famous person to have contracted HD is Woody Guthrie). Her mother has refused to get genetically tested to determine if she also inherited the HD gene - a 50% probability. Her daughter, Katherine, however, decided she had to know. And, at 23 when she learned of a testing procedure that she could finally afford — at Columbia University Medical Center in Manhattan — she went for it. She did this despite warnings of the consequences if she tested positive. She wanted to be able to change the way she lived her life based on the certainty of either dying from HD or not. The test can also determine how long she would have a “normal” life before the onset of increasingly more debilitating symptoms.
The test came back positive. She did indeed inherit the HD gene. She subsequently found out that she will most likely start experiencing symptoms at the age of 37. She is now 25. She has only an expected 12 years more of normal living.
So, my question is what would you do if one of your parents or a grandparent has/had Huntington’s disease? Would you get tested knowing there is a 50% chance of being free forever from fear but knowing also there is a 50% chance of getting your death sentence? It’s a tough call. In my case, I think I would not take the test.
As awful as it is, I would want to know. It would definitely determine how I would live my life. For example, I’m not sure I would want children if the test were to be positive. She can only hope there will be a cure in the next 12 years. An interesting dilemma (2 m’s) that may play out in other diseases as we learn more and more about how to read the genetic mapping of our bodies.
There is no way in the world I would go for the test.
The mind is so powerful - many of us inherited funky genes with the potential of developing into awful diseases, but so many factors determine whether or not a person gets sick. when you test positive for a certain gene, that plants a seed in the mind that is never helpful.
Also have to say it’s completely bullshit to tell this person she will “probably” begin experiencing symptoms at 37. No one knows that! The smartest doctor on earth doesn’t know that.
I feel so sad for her. She might have been fine, now she’s got the noose around her neck. It sucks.
Looking - I thought about the children issue too. But, there’s always adoption.
Reya - Yes, I think she is now a wreck. Uncertainty beats that I would agree. Age 37 is the “expected” (in terms of probabilities) age. She could get symptoms earlier or later, of course. The estimate is based on your “CAG” count (genetic marker). The higher the number of repeats, the earlier the onset of HD. The data is pretty conclusive. She did not learn about this aspect until a year or 2 after finding out that she has the HD gene. Also, there is a 100% probability that she will get HD. (Or as close as you can ever get to 100%). Let’s put it this way, up until now, no one with the gene has ever escaped the disease.
My point about the children is that unless there is some evidence that this disease skips a generation, wouldn’t she feel terrible if she gave birth to a child that also inherited the disease? Yes, I agree that she could opt for adoption, that is if an agency would give her a child knowing what her future holds.
barbara - yes, i agree she would feel terrible. so, i would suggest that if she does not get tested and decides she wants children, adoption is the only option. you have a point about the adoption agency, though.
I don’t think I’d be tested. I think that just knowing that it was a possibility would push me to live my life as if I already had the death sentence. Then, again, I already do. We all have a death sentence of sorts; we just don’t know when it’s going to happen.
Kristin - I agree. It’s not only the death sentence, it’s knowing that you will be going through an absolutely awful ordeal that could last years as the symptoms get continually worse.
Sorry folks….but I would want to know. Despite the drawbacks, awful prognosis, horrifying and lingering death……I WOULD look at life differently…..and some doubting, niggling thought in my brain would tell me that there might just be, a sliver of hope still left…..
Having lived with the number 1 ranked mental illness for cause of suicidal deaths, for my entire life, undiagnosed until 6 years ago…..believe me when I say - I wish I had known sooner……it would have changed my life.
red dirt girl - thanks so much for your insight. do you think the scenarios might be different though? for example, now that you know the diagnosis, can you take steps to improve your situation? Meds, etc. with HD, there’s nothing you can do about improving your medical outlook. although, i’m sure as you say you will look at life differently. it’s such a hard decision i think.
dd - you have a valid point……it IS helpful to know that there are methods, meds and the like to see me through….but I believe most of us have heard the adage that once born, we all are racing towards our deaths …
but realize - my mental wellness always walks a tightrope: trying to find the right combo of meds….only then to have them ‘punk out’ after a few months…and it’s falling off the rope time again…
I, knowing myself, would research my condition so thoroughly, and then do all possible to prolong my health and life….in hopes that a cure or at least something that would prolong life for HD would be developed …yes, indeed…it is a hard dilemma…ignorance can be bliss.
I’d want to know ESPECIALLY since there is no treatment…and I wouldn’t want to know because lifes just not that way… we are supposed to get surprised… its hard to say what i would do …i’m pretty sure what ever i did would be a didaster.
disaster! hehehe
I mean, in the long run, we’ll all be dead…right?
steve - think you have a good approach to life.
so the fact that the daughter has the gene means that the mom must too, right? so i think the more interesting question here is does the daughter tell the mom about the results of the test. it’s a hard secret to keep but the mother has already chosen not to know, and is it fair for the daughter to force her not only to hear about her daughter’s diagnosis, but also her own? the good news is that obviously the mom is older than 35 and hasn’t started showing symptoms yet.
i personally would definitely want to know. it would change how i live. a lot of people like to think they are living their lives “as if it could end tomorrow” but humans aren’t wired that way. at least i’m not. we are too good at living in denial. i learned this from personal experience recently. i’d want as much certainty as possible so that i can make decisions based on that.
jen - yes, my understanding is that if the daughter has it, the mom must also. you raise a good question about whether the daughter should tell her mom. i would say no, since she doesn’t want to know about herself. of course, she will eventually find out as you say. looks like people are very muc divided about wanting to know. interesting.
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