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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 22-07-08, 09:04 PM   #1
Approved Member
Join Date: Jul 2008
Location: Essex
Posts: 220
Default Hi I'm Pat

Hi All,

Im Pat and i'm and Alcholic.. Doh wrong forum!

I'm 33yrs old, Married with 2 wonderful girls, in terms of huntingtons im 'at risk'. My Dad was diagnosed 12yrs ago and died this April, ever since he was diagnosed I was adamant that I wouldnt get the test done.. whats the point, theres no cure right? but as I saw Dads condition get worse my view on that had slowly changed, there may be no cure.. but if i'm gonna get what my dad had.. I wanna know about it! and prepare (as much as possible).

Im a UK national but im working in the states, I return to the UK in September, I decided to get tested out here mainly because of the anominity factor - my USA test results stay in USA, and I can get the test done without my family knowing... they've just had to deal with losing dad they dont need to be worrying about me, my wife is the only person who knows and is sworn to secrecy.

I was tested 2 weeks ago, I went to get my results yesterday and the doctor greeted me with a 3 page result report and told me what good shape im in except for my cholesterol, I thought he was saving the best till last but when I asked him 'what about the big one doc? what about huntigtons?' the blank look on his face said it all.. they tested my blood for everything else other than what i actually asked for! maybe the NHS isnt so bad after all! Anyways, after much deliberation I decided to go for another test yesterday, I get the results next Wednesday. I hate needles, they better get it right this time! :)

I havent really thought much about the consequences of the results, i'll cross that bridge when i come to it, obviously I know whats waiting for me if i do have it. My biggest concern are my girls, obviously if i have it.. they might too.. and then my wife.. ive seen the hell my mum went through and I wouldnt want my wife to go thru that.. but conversely (and somewhat selfishly) i'd want her and my family around to help me if I did have it..

Anyways, sorry for the long introduction, my mum told me about the HDA and how they helped her and dad, she recently donated dads motorized wheelchair to them which has found a home already, so I thought i'd pop on and say 'Hi!'..
Roll on next wednesday!

Patrick is offline   Reply With Quote

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