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7285Re: [huntington's at risk] RE: Positive Testing Stories?

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  • Jennifer Tate
    Mar 6, 2014
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      Hi Jennifer,

      I am 43 and I am at risk also.  My mom was adopted so I didn't find out about HD until I was 29 years old. When I first found out about the disease, I immediately wanted to get tested.  I thought it would be better to know and to face whatever it was head on.  I thought the more information you have about yourself, the better. Then I started reading stories and talking to people about their own experiences with HD.  I read the book by Alice Wexler which was really informative.  I started getting more used to how to live with the 50% chance of having for the disease and I realized that I could live better with the 50% chance of having the disease than facing the 100% of having it.  For me I really need to have that little bit of denial/hope in my daily life.  I do everything I can to prepare and take care of my health and then I try to live each day one at a time to its fullest.  There are those bad days when I doubt myself like when I yell at someone or can't remember something but I usually am able to get past and have a good day again.  For me, I don't know how I would live with the certainty that these things are HD, especially when maybe they aren't.  Maybe it's just getting older but if I knew I had it, I don't think I would be able to keep doing all the things I do.

      My decision isn't permanent though.  If there is a treatment I will get tested.  Also, I figure if I make it through my 40s and I'm still o.k then maybe my odds will be better since most people develop it between 30-50.

      It is such a hard decision.  One thing I found is not to ask people who aren't at risk for their opinion because you never really know what you will do until you are faced with the real choice.  Thinking about it hypothetically isn't that useful.

      Take care,
      Jennifer


      On Thu, Mar 6, 2014 at 9:01 AM, <sbrooks11@...> wrote:
       

      Hi Jennifer, I am sorry to hear about your dad having this. My foster son's mother died of Huntington's but didn't know she could have it until she got ill. My son decided to get tested and he is positive.. He is not sorry he got tested but the hardest thing for him is that he has four children. And I don't think that his wife really wants to know anything about the disease. I did contact the H.D. Foundation and got lots of information and I think that has really helped me know what to expect. I agree with the other person who answered you. This is your choice and only you can decide if testing is the best thing for you. If you do get tested, try to have your best friend with you when you get your results, if you are positive it is not a walk you want to make alone but with the support and love of your family and friends. You sound like a wise person so either way you will get through this. You will be in my prayers. God bless, Sharon  


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