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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 11-02-18, 08:57 PM   #1
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Join Date: Feb 2018
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Default Predictive testing centers - questions

Hello all,

I understand this forum is based in the UK, but does anyone here have information on centers in the U.S. that allow an individual to undergo predictive testing without having family members and/or close friends present? I have contacted several centers nationwide and none of them will allow me to conduct testing without some type of “support.”

A few years ago my mother passed with HD. Nearly all her siblings had the same, as did their mother. My only surviving family member is my uncle who is also at risk. He is very emotional about HD and has said if I decide to go forward with testing, he will do the same. I don’t want my desire to know to be a catalyst for him feeling obligated to do the same. To be blunt, he is just not ready and I would rather keep this quiet.

None of my friends truly understand HD and I am not comfortable sharing something so deeply personal as genetic testing with them.

Please don’t try to dissuade me from undergoing this alone. I have a successful career, my financials and insurance are in order, and I am not mentally unstable. Having attended the pre-testing protocols (genetic counseling, evaluations, etc.) with people in my family, I am well aware of the implications of testing. Having lived with this threat and watching the people I love go through it, I do not need a counselor to explain to me what I already know. A positive or negative test will not rock my world - I am prepared and have reached a mature point in my life where I simply want to know.

Thank you.
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