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Jan. 19th, 2009

9 and 17 are now officialy my lucky numbers.

I have just got my presymptomatic HD test results and feel soo lucky to be able say it was negative.

My CAG repeates came out as 9 and 17 :

<27 Normal Unaffected
27–35 Intermediate Unaffected
36–39 Reduced Penetrance +/- Affected
>39 Full Penetrance Affected

all the affected members of my family have a very high CAG count so my results coming in soo low was a real shock.

I am of course happy but at the same time am very worried about how this will affect my brother and if he ever does get tested how guilty i could potentialy feel for being ok.

I have put my name down to assist in any clinical trials that require people that have had the negative test and will be here on this forum if any one ever needs some one to listen.

best wishes and luck to you all,


( 3 comments — Leave a comment )
Jan. 19th, 2009 01:54 pm (UTC)
Just want to say thank you for sharing that good news here. It brought back one of the best memories of my life, when the doctor told me I was negative for HD back in in 1996. My father and brother both passed away from Huntington's. My father was already gone when I got my results. My brother was still living, symptomatic but with years still to go, and he was relieved and happy for me, and holwever it goes with your brother, your news is good on its own merits.

God bless.
Jan. 19th, 2009 08:53 pm (UTC)
I am glad i could help you remember that good time of your life.
My father died of HD and my uncle is symptomatice, my uncle is soo happy that i am clear and seemed so relived when i told him. it made me soo glad i could give him a ray of light in his dark times.

I hope my brother is ok but know it is completly unrelated to my current happyness.

thank you for your kind messsage,
Jan. 20th, 2009 08:33 pm (UTC)
I am so overwhelmingly happy for you. It also reminded me of how I felt when I found out my Mum didn't have it. I swear, it took us a year to take it in and deal with it.

Congratulations, the roll of the dice was in your favour.
( 3 comments — Leave a comment )

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