Huntington Disease Lighthouse Families

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Question?

Posted by CJ878 
Question?
December 17, 2012 02:14PM
1. My husband is at risk and is 24 years old.

2. His mother became symptomatic at around age 43

3. I know that onset age varies from individuals even within the same family.

4. However, if my husband is gene positive, and he becomes symptomatic in his forties, does anyone think there will be any form of treatments by then?
5. I know that no one on this site has a magic crystal ball that will tell the future. I just wanted a more informed opinion than my own. I have only been following HD research for around a year. I many of you have been following research for many years. I am scared to do certain things like buy a house. I know that we need one, but I am just afraid to make major purchases. I really hope I am able to eventually not think about HD every waking moment. I hope it gets better with time.

Thanks for any thoughts or opinions Thanks!
eve
Re: Question?
December 17, 2012 07:57PM
I don't have a magic answer for you. One famous quote I like is, "Plan for the worst and hope for the best. " Basically I want to say that you should carefully think through every scenerio and "what would happen if______ (fill in the blank) then possibly_____(fill in the blank). You've got to live your life and try not to live in fear. But that being said, make smart decissions so you don't end up with a mess.
I would like to think there's a cure around the corner. There certainly seems to be a lot of promising research and several potential treatments/cures on the horizon. The prolem is that it seems I've been hearing that for awhile and I feel impatient. I think sometimes getting the treatment/cure to the people that need it is not as easy as you'd think. Issues such as research trials have to be done (perhaps there aren't enough volunteers and that might slow things), money might be tight ('lots of fiscal cliff talk/budget cuts mentioned especially lately), and bringing the actual drug/treatment to market takes time and money. So I think it's really hard to put a timeline on it. I hope others will answer you. I'd be interested to hear other's thoughts.
Re: Question?
December 17, 2012 09:29PM
It is true that we live in fear, but having a daughter that is turning 24 pretty soon she is at risk, do not want to test yet, she said she will if she decide to have kids, but right now she is in college getting her degree and doing the best she can in life after her dad got sick, she said that she will live and do what she wants in life and time would tell if she show symtoms or not, I know deep inside she thinks about it, but it does not let it get to her I am very proud of her she will finish college this coming year and very excided for her, I think you need to think over everything you want to do like buying a house if you could do it right now go for it, dont be scare people that are not sick get in really bad situation and can afforted to pay bills it can happen to anybody dont be scare to live. Me and my husband did everything we want to do in life we had kids buy a house we did not know anything about HD we find out about it when my mother in law pass away. What I am trying to say is that if you are worry about what it is going to happend in the future your are going to live a sad life before time, you guys are young live life do what ever you decide to do,dont let HD wins and how you live your life when is not even symtoms yet . Hope you understand what I am trying to say, good luck.
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