Michigan-Detroit

XP: NWR - WWYD??

So this is a serious post, I know people here can't give me my answer but I thought some outside opinions would be good to hear so here goes!

2 years ago my dad was diagnosed with Huntington's Disease.  It is basically an a-hole of a disease - I would compare it to a mix of Parkinson's and dementia.  His dad and 2 of his brother's died of it - if you have the gene, you WILL get it.  So far he's doing okay but it's really taken a toll on him mentally.

The real kicker is that if you have it and you have kids, each kid has a 50% chance of having the gene (again, if you have the gene, you WILL get the disease, no questions asked).  Lucky me, I now have a 50% chance of dying of this crap.

In order to be tested for the gene you have to go through EXTENSIVE therapy to be sure you are mentally able to accept the news of this death sentence if you have it.  There are no cures and there are very limited treatments like things to help reduce the chorea (shakes) and different therapies for all of the mental changes that go along with it.

My question is: Would YOU want to know if you had this disease?

I can totally see the benefits if you want to have kids - if you know you have it, you can undergo invitro or (if you choose to) you can choose an embryo that does not carry the gene - thus eradicating the disease in your family.  I also feel like if you got a negative result, you'd feel super relieved and happy.

But what if you got a positive result? Would it just ruin your life? Would you be able to go on?  I get that life is what you make of it, but this is an UGLY disease, and it is a death sentence.

I was at a Walk for a Cure yesterday and this one girl's story hit home.  She was 26 when her dad died of it - she got tested and she was gene positive.  She tried to push her bf away but he wouldn't let her, and they decided to just live in the fast lane.  They got married right away, took an awesome honeymoon, and now they are expecting their first child (I was curious if they left that up to fate or if they did some kind of intervention but it was none of my business).  I'm 26, my dad was diagnosed 2 years ago, and I'm getting married in November.  I struggle every day with wondering if I should get tested and what I would do if I was positive.  I feel in my heart like I have it.

So, WWYD?
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Re: XP: NWR - WWYD??

  • This is 100% a personal decision.

    However, I would want to find out. Mainly, for the children reason. Also I would want to make sure I was able to live my life to the fullest.
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  • Will it affect your insurance if you find out you do have it? If so, that would be my reason for not being tested.

    I, too, have a genetic disease that I have a 50/50 chance of passing on in every pregnancy I have. I had to receive a kidney transplant at 22 because my form of the disease was advanced enough. On the flip side, my father is 61 and transplant-free for now.

    It's something I struggle with as far as having kids and such, but I'm fairly certain I've decided to have my own kids (as opposed to adopting) and to possibly risk passing the disease on. Having children is more important to me that eradicating the disease. Also, in 10 years, who knows what medical research will have discovered?

    But, back to diagnosing yourself. Pre-existing conditions are kind of a death sentence when it comes to insurance (one reason I'm in full support of Obamacare, but we won't get into that here.) Until insurance companies are able and willing to take on people with pre-existing conditions and not deny coverage, you risk losing insurance now or in the future if you are positively diagnosed. So that would be my one caution against it, depending on your coverage.

    I think in the end, I'd still want to know. I have a friend who was tested for the breast cancer gene and found she had it. It was tough, but like you, she somewhat expected it, and knowing has allowed her to be more mindful in her planning for children, etc.
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  • I would want to know. You'll know eventually if you do get it. Right now I feel like you are wasting energy worrying about it. You'll worry about it forever if you don't have it, just waiting for something to happen.

    Have you and your FI discussed this together?

    I feel like you are leaning toward getting tested.
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  • I would absolutely want to know. At 25 I was diagnosed with rheumatoid arthritis and for a while it was really upsetting and I worried I wouldn't have the use of my hands for very much longer, but now I've learned that even if you find something like this out, it doesn't HAVE to change the way you live your life. Knowing can help you take preventative measures though - like how I had pretty dibilitating joint pain for a year before I finally saw a doctor and found out the diagnosis...now I'm on medication and haven't had a flare up in over a year and my life is 100% better for that. The ability to plan out a course of action if you do get the worst case scenario is also really good. I'm a big believer in knowing earlier is better than putting it off and being "surprised" later.

    Goodluck with your decision. Regardless of what you choose just remember that your FI loves you and that you CAN and WILL lead a productive healthy life for as long as you can.
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  • This is somewhat ironic. I'm taking a human genetics class, and last week our main discussion was about HD and if our families carried the gene, whether or not we would get tested.

    My personal decision would be to not get tested. Granted, I'm not sure if I'd stick with that position if it really came down to it. 

    It is 100% your own personal decision. Not knowing could cause you to stress and wonder for the rest of your life. Knowing could cause you to stress and wonder when.

    I would rather not know. I would want to just live life normally, and whatever happens, happens. However, I base this thought on me not wanting kids. If I wanted kids, I would change my mind. Since I would not want to pass the gene down, I would want to be tested for whether or not I have it before I had kids. 
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  • If it were me I would get tested.  This disease is already hanging over your head because you have no certanity.  So either you find out that you have the gene and it's still hanging over your head or God willing, you find out you don't and it is no longer hanging over your head.  The only chance you have to be free of worry would involve you getting tested.

    Also, keep in mind that the medical community could make leaps and bounds in dealing with it between now and the time a person finding out she carries a gene actually shows symptoms.  There's hope.

    My prayers are with you and your family!
  • In Response to <a href="http://forums.theknot.com/Sites/theknot/Pages/Main.aspx/local-wedding-boards_michigan-detroit_xp-nwr-wwyd?plckFindPostKey=Cat:Local Wedding BoardsForum:88Discussion:5cca47b4-a403-42fd-a948-f6f3cf1211caPost:8d6a86f1-cecb-4a76-b06e-52541b7c0f16">Re: XP: NWR - WWYD??</a>:
    [QUOTE]I would want to know. You'll know eventually if you do get it. Right now I feel like you are wasting energy worrying about it. You'll worry about it forever if you don't have it, just waiting for something to happen. <strong>Have you and your FI discussed this together? I feel like you are leaning toward getting tested.
    </strong>Posted by acaponi87[/QUOTE]

    We talk about it all the time.  He really wants kids, and I kind of am on the fence...but if I did, I wouldn't want in vitro or anything like that.  So we talk a lot about whether we would just go ahead and have them not knowing if I have it or not, or if I should get tested.

    The thing is, my uncle got tested and was positive and his wife left him, and when my dad got his positive results, he kind of lost it and now he lets it control his life.  So what I see is that it just destroys lives instead of pushing you to live it to the fullest.

    There are arguments for both sides, and believe me, I know them and understand them all.  Thank you EVERYONE for answering me and sharing your stories - you've given me lots to think about :)
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  • Sorry, I'm late to the game, but here's my input (as an older person, who also has kids).

    I'd get the test. Yes, there may be cures in the future for anyone who is positive, and if not your generation, then your kid's generation.

    However, there are all sorts of traits that can be passed along that are not genetic diseases or terminal illnesses. For example, my son had ADHD really bad as a kid.....I was a "hyperactive" kid according to my mom, so of course we assume he got that trait from me.

    Depression runs in our family big time. My dad and my late brother had it, then I realized I had it several years ago and was put on meds. My daughter has it, and is on meds.

    High cholesterol runs genetically in our family. No matter how well we eat, no eggs, no fats, my Mom & I have it. I've had my daughter tested because we want to make sure.

    NONE of these are serious or terminal. However, being aware has meant that we keep our eyes open and know that there is a predisposition to these issues. NONE of these would have made me change my decision to have children, obviously......they are treatable.

    I would ask this question differently however: suppose Muscular Dystrophy ran in your family instead of the HD. Suppose it was a disease that manifested itself in childhood instead of a 50-50 chance in late adulthood. Would you decide differently on how you conceived your children? Might you consider an egg donor with no disease and carry the child yourself? Does it matter whether you are subjecting yourselves to the child with special needs instead of perhaps the spouse of your future children, or your future child when they are older? Does it seem easier to accept the possibility of passing it along to a child who may or may not get it, but if they do, it's manifested after you are gone?

    This is a really serious topic and I can tell from your post, and that of others, that everyone is touched by your situation. I am sorry you are having to deal with this along with the joy of a pending wedding. It is not fair. I have probably lived about 30 years or more than you have. Had I been faced with this decision in my 20's, I definitely would have wanted to know. My reasons are above, but also, you never know when there will be therapeutic trials, or other things that will occur and only be available to people who KNOW. Yes, there is a fear to knowing, but so is there one to not knowing. If I had this, and had known my entire life, I have a feeling I would have lived much more fully. We all only have a limited time, and don't know when the end is near. But if it is a terrible disease, I know I could never have passed it along to my kids, not even a 50-50 chance.

    Having said that, Kevin's dad died of dementia & Alzheimer's before I met Kevin. I notice that when Kevi n gets forgetful, can't find his keys, he gets a frantic sound in his voice. I sense he fears the same disease may be in his future. Doesn't change the way I love him, or how we treat each other. I doubt he even knows I sense this.

    I also do worry about the health insurance thing, but your employer cannot discrimate against you due to the GINA laws, but sadly, health insurance is a different story. I don't recall seeing questions come up on health insurance questionnaires regarding genetic diseases, but if you are ever uninsured and have to seek your own care, it may be a problem.

    Good luck dear and I will keep you in my thoughts. So sorry you are having to deal with this.
  • First off, no matter what other people say, it is definitely a personal decision.  Please do not let others change your decision on getting tested or not.

    Beyond that, I would definitely get tested.  I feel like for me, it would definitely be better knowing if I'd have it or not as opposed to just wondering for years and years.  If I had it, I would definitely make some changes in my life and enjoy life more as well as definitely not work as much.  If I did not have it, I'd still try to enjoy life more knowing that I have a life to actually enjoy and that will be extended.
     
    Luckily, for those that do have it, I know a few amazing researchers who are dedicating their life work to helping those who have it.  Some are working on treatments and medications, others are working on more preventative measures to help turn the gene off.

    No matter what you decide to do, good luck and know we are always here.
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  • That is a tough decision and I will throw in my 2 cents. I think if you want to have kids or this is putting you on the fence about it I would get tested so you can plan your parenthood without that hanging over your head. On the flip side if I wasn't planning on having kids in the future I wouldn't want to know. Personally if it was positive it's like I would constantly be waiting for the symptoms to start. I wouldn't go to psychic medium and ask them to tell me how I am going to die. We are all going to die and I wouldn't like the feeling that I already have a predetermined fate. Again I am not going through this and it's a personal decision that you and your FI should make together.  Good luck and stay strong :)
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