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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 03-05-08, 09:57 AM   #1
suzanna
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Default Genetic Alzheimer's gatecrasher

hi everyone,

i'm a bit of a gatecrasher i'm afraid, as my family has genetic Alzheimer's, not Huntington's.
However, i have searched high and low for someone else in the 'genetic Alzheimer's boat' to no avail... apparently less than 5% of all Alzheimer's is genetic (but somehow this doesn't make me feel very special!).

Anyway, i believe that the inheritance pattern is the same for the two diseases (i'm at a 50:50 risk) and so thought i could gatecrash your online support group, if that's ok.

Anyway, i won't go on and on for now...

Suzanna
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Old 03-05-08, 02:38 PM   #2
just1moreperson
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Default Re: Genetic Alzheimer's gatecrasher

Welcome Suzanna,

Tell us more about yourself! I for one welcome you. Maybe we can find you a website somewhere in the world wide web that is for people just like you.

Tc, Matt.
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Old 03-05-08, 06:47 PM   #3
poppysox
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Default Re: Genetic Alzheimer's gatecrasher

hi suzanna
welcome to the board i have to admit i have never heard of genetic alzheimer's either but hopefully someone on her will have and maybe put a post on the board for you
nice to have you join us anyway you are very welcome
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Old 04-05-08, 09:58 AM   #4
suzanna
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Default Re: Genetic Alzheimer's gatecrasher

Cheers for the welcome guys!

more about myself...? I'm 23 years old, just finishing a 4-year degree in speech and language therapy (19 days to go!!).
My Grandma had Alzheimer's which started when she was about 60, and my Mum developed it when she was about 56, (when i was 19). The doctors decided this early-onset (people usually get it in their 80's) and the fact that it had happened to two generations in a row meant it was worth doing genetic testing. They found out that there is a defective gene or something, which there is a 50:50 chance i have inherited.

I know i won't find anyone else here in the exact same situation, but in terms of genetic testing, which is the road i think i'm going to go down i thought this might be a good place to get some opinions and support? I have read all of the posts already (whilst waiting for my membership to activate) and i have already found it incredibly usefull, you all seem so lovely!

I think everyone who has gone for testing/are in the process are incredibly brave, i think i'm 99% sure i'm going to go, but want to make sure it's because i'm 100% sure i can cope with a positive result, and not just because i'm the eternal opptomist...!

thanks again for your welcome,

Suzanna
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Old 04-05-08, 02:06 PM   #5
just1moreperson
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Default Re: Genetic Alzheimer's gatecrasher

Hiya Suzanna,

That's interesting to see you can get tested like that for Alzheimers. I'm 19 myself and am being tested for HD right now. Will know my results by the end of May. Do you know how long the test process is for you?? Wonder if it's the same length as HD tests.

Tc, Matt.
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Old 04-05-08, 10:10 PM   #6
angelad
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Default Re: Genetic Alzheimer's gatecrasher

Hi Suzanna
Just want to say welcome and hopefully you will find some strength from our group even though we dont have the same illness
welcome
Angela
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Old 05-05-08, 11:11 AM   #7
suzanna
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Default Re: Genetic Alzheimer's gatecrasher

hi Angela and Matt

thanks again for the welcome.

People don't really know about genetic testing for Alzheimer's because it is only in the very few genetic cases that a test can be done.

I'm not sure how long the process would take, i think the test itself can be processed within a few weeks of having blood taken, but they want you to go for plenty of counselling first (as with HD i presume). We found out that i was at risk last May/June but i went away to Africa for a few months and just put it to the back of my mind. When i got back i went to see a genetic counsellor a few times but we decided that with it being my final year of uni it might not be the best time to persue testing.
I finish uni in a few weeks now so i think its about time i started to deal with the whole thing.

I have an older sister who has decided she doesn't want to be tested, and can't understand why i want to be... i am also worried that if i get a positive result this will upset her. Does anyone else have experience of this? Matt - do you have siblings?

i think it is so different when you're our age and without partners and children, in a way it is easier because we don't have to worry about the next generation, but it is also harder because the result will affect any future relationships etc..

hope everyone is well,

Suzanna
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Old 05-05-08, 03:15 PM   #8
just1moreperson
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Default Re: Genetic Alzheimer's gatecrasher

Well I don't have any siblings and given that HD is in my family it's a blessing I guess. At least for me it is. I don't have to worry about them.

You being tested doesn't mean your sister has Alzheimers though does it. It may upset her if you got a positive. She may feel worried if you were negative, worried about herself I mean. It will effect her either way but where testing is concerned you have to do it for yourself. If you want to know then go find out, It's no one elses choice. I think it does make it easier being single and not having kids to worry about. It is probably the best time to get tested. It allows you to adjust your life anyway you need to. Having said that if you find out it's in your family and you have kids then that's as good a reason as any to get tested.

There's no real right choice. It's simply up to you.

Tc, Matt.
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Old 20-09-08, 11:03 PM   #9
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Default Re: Genetic Alzheimer's gatecrasher

Hi Suzanna

I have Huntington's and my dad has Alzheimer's. I think he was diagnosed in his 70s hes nearly 81 now.

I had my test for hd in 1994 so i know what u are going through. I have a daughter who tested negative 6 years ago and a son who is just beginning the testing process.

Take care Suzanna

Jillx
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