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Hasina

Fifty-Fifty: Whether to Test for Huntington’s

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Fifty-Fifty: Whether to Test for Huntington’s Disease

by Mona Gable

'UNTIL HE DIED in 2010, my brother was often mistaken for being drunk. There were the frequent car accidents, the flashes of anger, the cloudy thinking, and especially Jim’s wild body movements and slurred speech. People would stare after him as he lurched and wove down the sidewalk. We thought his illness was the result of a snowboarding head injury. When I’d press Jim about his health, he would deflect my questions. “I’m better,” he insisted.

Then Jim was dying. As I sat in the pale winter light of a hospital room in Colorado with my sister-in-law, she confessed that for years she’d suspected he suffered from a deadly hereditary disease. I forced the truth from his doctor: my brother had Huntington’s disease. I didn’t know exactly what Huntington’s was, but I knew it was an irrevocable death sentence.'

...

'It wasn’t until after his memorial service that I focused on what his diagnosis meant for me. One night I sat down at my computer and did a Google search. Huntington’s is all about the numbers; I learned I had a 50 percent chance of getting the disease. There is no cure. Then I saw the unthinkable: not only might I carry the lethal HD gene, but my children might too.'

Source: http://www.psmag.com/health/fifty-fifty-huntingtons-disease-51416/

I decided to post this in the Philosophy and the Psychology section because it's a mental choice that could affect a person's entire life and world views. What are y'all's views on such diagnosis? If there was a chance you might, would you?

Edited by Hasina

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No, I'd rather not know. Not out of fear but it's for the simple reason that's it's one more thing to deal with. Symptoms will appear eventually at whatever age so until then, I'd rather not bother with it. The psychological effects that can have would no doubt be horrible for those afflicted with it, I feel for them and hope for a cure. Here's to hoping! :tu:

Edited by Sean93

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There are now all kinds of prenatal tests for all kinds of possible genetic anomalies.

For the parents.

Ergo ,what used to be an area of unknown ,is now focused upon .

So if mom has genes abc,and dad has genes xyz ,the baby can have a slew of diseases so rare ,most people have never heard of them .

It's an excuse to make money on needless tests,and send parents to be into a coma worrying .

It's bull****.

As for things like diseases in young adult and adulthood ,it might be better to know,if there's a family history ,this way it can be addressed,as soon as symptoms show ,but then again,it can cause all kinds of unnecessary angst ,if its just a possibility ,and not a probability .

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Very sorry to hear about your brother. And I'm sorry that you are faced with this choice.

I cannot lend my opinion on these exact circumstances, but I will on a personal front, in my life. My father suddenly died, 7.5 years ago, of a brain aneurysm at 36 years old. Doc said it was something he had since birth. At that point, I hadn't much thought about how that affected me in any way, I was too busy grieving. It wasn't until I went to the doctors for a routine checkup, and the doctor said he had heard about my father(small town), and being an hereditary condition, I could have some tests done to see if I could be at risk. My doctor rattled off a few statistics, but I ultimately decided not to have the tests done. I decided that I live my life the way I wish to live my life, and I wouldn't want a time-bomb ticking in my brain, or anywhere else, that I'd have to worry about. I don't want to be wrapped in the chains of thinking "Is today my day?", day after day.

The great thing, I feel about my decision, is that for right now, it only effects myself. I'm not married, although should probably be considered married!!! I don't have any children. So I feel that, for right now, my decision is the right one for myself. However, once I am married and have children, my opinion may change. So far, this has been my choice, and I'm happy with it.

Ultimately I think it's important to really follow yourself in this situation and to make a decision that you, yourself, are happy with.

Good Luck. I wish you the very best.

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Very sorry to hear about your brother. And I'm sorry that you are faced with this choice.

Good Luck. I wish you the very best.

It's not my story, do know that, but I was faced with the same question and though my own family issues with the dieases are vastly different, it connected with me because of the questions the woman faced while her brother was still alive but going downhill, and afterwards.

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Fifty-Fifty: Whether to Test for Huntington's Disease

by Mona Gable

Bah! My bad, I skimmed over this ^, and didn't click the link. I assumed it was a link to Huntington's Disease.

Well, either way, my opinion is in there. Sorry for the extra reading, and the background, everyone...

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Bah! My bad, I skimmed over this ^, and didn't click the link. I assumed it was a link to Huntington's Disease.

Well, either way, my opinion is in there. Sorry for the extra reading, and the background, everyone...

No no! Thank you very much for sharing. Although I'm not glad others have to go through similar problems, I'm somewhat (guiltily) glad that there are others who understand the mind set and the situation.

When it's the vague 'you could die any day', it's easy for it to drift into the background. But when it's like your own body's gonna betray you? It's tough, it's just good to know it's not a mental struggle I am alone in thinking about.

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I think that I would want to know. I think that it would be more frightening to develop the symptoms and not know what is going on.

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I'd rather not know. After all, there's nothing that you can do about it, except stew. I'd rather go through life whistling a happy tune, and then go, "Oh, crap. I guess that I'll have to learn more about my new reality" and then try and deal with it.

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Rather know for sure then try to guess what it could be. If something that drastic was happening to me I would have to know. If it was something that would kill me quickly then I wouldn't really care if I knew or not knew simply because I wouldn't be able to make my life any easier or better from that information.

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Honestly i would want to know,i have always tried everything i could do to counter act any type of health concern i could by natural means.Before i get all the people telling me well you cant do such and such because this,that,and the other i know some things cant be taken care of.Some things are discovered to late is the main reason why,and sometimes there is just no known way.My grandfather was one of the toughest,most hard*ss people ive ever known he made me who i am today.A marine in the korean war and a self made man he did everything the old fashioned way.Doctors kept telling him he just had various stomach probs his last 9 months i knew better,the first 3 months he lost almost 75 lbs they kept giving him bs medicines saying he would be ok.I knew myself just by looking at him he wouldnt be with what they were saying.To make a long story short i was the only person he could stand to be around his last month alive and all i could think about for the next year of my life when i had spare time to think was if i could have known what really was going on i could at least have slowed it down i could have done something.So if it was me yes i would want to know,maybe i could slow it to the point i could at least enjoy my last bit of time i was around,and if it was something long and drawn out i would still want to know so maybe i could negate it over time almost completly.

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No no! Thank you very much for sharing. Although I'm not glad others have to go through similar problems, I'm somewhat (guiltily) glad that there are others who understand the mind set and the situation.

When it's the vague 'you could die any day', it's easy for it to drift into the background. But when it's like your own body's gonna betray you? It's tough, it's just good to know it's not a mental struggle I am alone in thinking about.

I understand completely. You don't wish it on anyone, however, find comfort in knowing your aren't alone. I think that's completely natural.

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Take the test. The test isn't going to change anything, but if you test positive then you can plan accordingly. Likewise, if you test negative then you can plan accordingly as well.

Fact is we're gonna go somehow, if you have some idea how then you can at least plan around that. I recall reading about a woman who's mother died of breast cancer, the test was just out to see if you had the genetic marker for it and she did, so she went ahead and had her breasts removed before the cancer came. Yeah, it's radical, but she could make an informed choice at that time. If it was me, I'd go for the test. Like I said before it isn't going to change anything one way or the other but at least I'd know I had the gene.

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With Huntington's, there is something of a responsibility to know since you will be passing it on to the next generation if you have it. The only way to stop Huntington's is to stop having children, and that is a terrible place to be in, to know that you are giving up your own children for a future generation along the line, maybe long after you are gone.

Other heritable conditions are a bit different. If you have the BRCa gene, you have the option of double mastectomy to prevent future cancer. If you have a family history of heart disease, you can choose to make drastic life style changes to reduce, but not eliminate your risk.

The risk/benefit ratio is different for every condition, and can change with medical breakthroughs, although you have no idea whether those will happen in time to benefit you.

Lots of hard decisions and little ultimate control over your own situation, just educated guessing. Life is a crapshoot. That's just the hand we are dealt.

Edited by linttrap

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People who know or suspect a history of genetic illnesses should inform all those in their group who need to know, spouses, children who are already adults or near it with exceptions for maturity, persons they might want to marry, and any other in long term relationships, then as a group they should decide whether to have a test taken but the final decision should always be with the person who is at risk to take a test or not. A discussion should be required still.

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One of the scariest things i have ever witnessed,one of my uncles by marriage was always a very healthy guy about 250 lbs a vegatarian,exercised,ate right,never drank or did any drugs died of creutzfeldt-jakob disease.Went from extremely healthy to dead in about 6 to 8 weeks.Absolutely one of the worst things i have ever witnessed,would not wish it on my worst enemy.

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People who know or suspect a history of genetic illnesses should inform all those in their group who need to know, spouses, children who are already adults or near it with exceptions for maturity, persons they might want to marry, and any other in long term relationships, then as a group they should decide whether to have a test taken but the final decision should always be with the person who is at risk to take a test or not. A discussion should be required still.

Exactly. That's one of the biggest things on my mind. If I do ever end up in a serious relationship, it wouldn't be fair to my significant other when they become less my partner and more my care taker, it's robbing them of a life and a chance at a more, for lack of a better term, fulfilling relationship.

Edited by Hasina

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Exactly. That's one of the biggest things on my mind. If I do ever end up in a serious relationship, it wouldn't be fair to my significant other when they become less my partner and more my care taker, it's robbing them of a life and a chance at a more, for lack of a better term, fulfilling relationship.

Agreed,but if everyone got scared and ran off because of one's condition or family history the human race would become extinct rather quickly.Life is to short,live and love while you can and if one truly loves someone taking care of them will not be a concern no matter what.

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I don't know whether I'd take the test. On one hand, it would be very scary to begin showing symptoms and not know what was happening to you, if you didn't know you had it.

On the other, if you did know you were likely going to develop it at some undetermined point in the future, it has the potential to seriously affect your quality of life. I mean, you'd get to a certain age, and every time you did something that could possibly be construed as a symptom of Huntingdon's, just the odd stumble (which is very easy to do anyway, especially if you're clumsy), or even just dropping things. It could easily make you paranoid, and you wouldn't be living the years you have of sound health to the full.

Also, it could depend on the stage in your life you're at when the situation arises where you may want to be tested for Huntingdon's. If you have had children, the decision is more about you, as the children may or may not have it too - you cannot change that, there is no decision involving choosing whether or not to have children. It's more about whether you want to know. If you haven't had children, and intend to, there could be more of an issue in deciding whether you want to risk passing it on to your future children.

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