You find out your mother has Huntington’s Disease. There’s a 50% chance she passed it on to you. A test will conclusively tell you whether you will one day develop it or not.
Do you want to know?
Yes, I’d want to know. I’d want to do make sure I’ve got a way to kill myself lined up before the symptoms become more severe than I’m willing to live with. For me, that’s somewhere after the initial decline of muscular control and before the dementia.
18 years ago, I’d have wanted to know so as (if I had the mutated gene) not to have had any biological children, but that’s water under the bridge now.
I’d definitely want to know. Ever see House? I’d do exactly like 13 did after she found out she had it. I’d want to get as much living done as I could, and do like WhyNot suggested, having a way to off myself before it gets too bad.
I wouldn’t. I agree that I’d want to prepare for the possibility that I had it, but you can do that without knowing whether you have it, and I don’t see any real benefit to knowing-for-sure.
Well an obvious benefit to knowing would be if you didn’t have it. Then you could relax without the big cloud of doom over your head for years or decades. That easily outweighs any other issue for me.
Supposedly 95% of people who are actually in this situation say “no.” We’ll see if the poll fits this.
Well, yes, but on the other hand, there’s a 50-50 chance you would end up knowing for sure there was a big cloud of doom hanging over you, and I don’t think I would want to live with that certainty.
I’ve sort of been in this position, and wanted to know then, so if Huntington’s was a possibility, I’d want to know that, as well, but probably not ASAP.
There are practical considerations for people who are actually in this situation. Acquiring and keeping health insurance and long-term care insurance not the least among them. Obamacare will remedy some of this around 2014 IIRC, but the stigma will remain.
I am already dealing with parkinsons running in the family [great grandfather, grandfather and one uncle - my uncle had it bad enough that after a while the electroshock thingy they implanted just stopped being effective.] That combined with already being doomed to life in a wheelchair when the joint issues get bad enough in my feet, hips, back and knees [great, I have wonderful ankles sigh] makes my life look wonderful in a while.
And for what it is worth, I actually do plan on offing myself - and keep an eye on reports of where it is legal for assisted suicide, and possible methods.
I would absolutely want to know of any major illness I may have. Heart problems run in my family so I keep a close eye on that, I get regular HIV/STD testing and so on. I can’t imagine not wanting to know.
I would because I have not yet had children and if I was a carrier of the mutation I would not want to risk passing it on.
I would want to know. Face it, it’s already happened and forewarned is forearmed. It’s already been decided so it’d give you a chance to live your life to it’s fullest.
[This](http://query.nytimes.com/gst/fullpage.html?res=9501E4DD1630F93BA25750C0A9619C8B63 [url) woman found out.
One of the saddest and most memorable articles I’ve ever read.
Damn. I have no idea why that link isn’t working.
Maybe this one will?
http://query.nytimes.com/gst/fullpage.html?res=9501E4DD1630F93BA25750C0A9619C8B63
I have cousins whose mother had it. I don’t know if they’ve been tested, but I sure would. I damn sure would make sure not to pass it on, and would make different life decisions if I had it.
Huntington’s afflicts my best friend’s father’s family. Her grandfather died of it, horribly. Her father refuses to get tested. IF he carries the gene, then she and her four siblings all have a 50/50 chance of having the gene themselves. It’s terrifying not to know if you’re carrying a ticking time bomb within your genes. She’s vowed to get tested before she ever gets married or has children – if she has the gene, she’s not reproducing. As she puts it, “The gene has to be stopped somewhere.”
I’m with her. I’d want to know. It’d break my heart to never have biological children – but it’d be worse to have them and then learn later that I’d condemned them to a slow and agonizing death.
This is my answer too. I really don’t want to pass anything devestating along to kids. I’d rather not have any kids than have a 50% chance of giving them such a terrible inheritance.
I’d want to know. I couldn’t stand thinking with every little spasm, every little twitch, “Is this it? Has the disease started?”
I have some inkling of what this situation is like. My dad had limb-girdle muscular dystrophy. There are many different kinds, some recessive, some dominant. I’m hoping that since he’s the only one in the family to have gotten it, that means it’s likely to be recessive. I know that’s not rock solid proof, but I’m hoping.
There’s no test to find out about my chances. If there were, I’d take it.
Absolutely not. I can’t do anything about it. It might mean I don’t have as much time left as I’d like, but I like to think I live that way anyway. I don’t have kids and wasn’t planning to anyway. I can’t really see an upside to knowing.
I recently worked with a guy who was developing it - in his early 30s. Really sad - I’d never encountered Huntingdon’s at all so didn’t connect his twitches with the disease, just thought he had a nervous tic.
The guy was really poor at his job, to the extent where I used to think he must have some genius hidden talent as there was just no way he could have been appointed otherwise. Of course I felt like an ignorant twat when someone explained to me the real reasons for his work performance.
The guy was apparently adopted as a baby from a mother who had had Huntingdon’s, and was never told. Doesn’t seem right to me that, but maybe there are reasons for it. Bleak story all round.