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7283RE: Positive Testing Stories?

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  • egbalogh
    Mar 5, 2014

      Hi Jennifer,

      When I was tested at 31 (I am 33 now)  I didn't go through the genetic counseling because I couldn't really afford it on my own and I didn't want my health insurance paying for it.  I didn't want them to know of the possibility that I might have it even though under GINA we technically should be protected from discrimination because of our test results.  So, I requested that my primary care physician run the test for me.  I had to educate her about Huntington's first and she had to figure out how to get the test done, but she was really great about it.  It actually helped her later on when she had another patient come in asking for her to run the same test on them.  Once I received the test results (I am positive, but in the grey area of reduced penetrance) I told my family who were supportive and helped me through it. 

      The reality for me, though, was that whether I got tested or not wouldn't change the fact that I had it or not.  At least knowing has allowed me to be proactive in doing whatever I can now to hopefully keep myself as healthy as possible if or when I finally develop symptoms.  For some it is easier to just not know, but it really is an individual's choice.  For example, I have two older sisters who have decided to not get tested yet.   I still just live my life as I choose because that is all anyone really can do.  So, whatever you decide to do regarding being tested just make sure it is the right decision for you. I hope this helps in some way.  If you have any additional questions I would be happy to answer them the best I can.


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