Hi

Just another thing quickly i am suffering from depression and also i have
noticed that over the last few months i have been getting quite forgetful and it
worries me but if u look at my previous email surely i have no chance of having
HD?

Thanks.


---------------------------------
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[Non-text portions of this message have been removed]

Hi April


Thank you for your email.
Well i do not have any family history.
My parents are both 42 years old and are healthy and do not have HD.
My Mums Mum and Dad are in their mid 60's and they are fairly healthy and do not
have HD.
My Dad's Mum is 68 and does not have HD, And my Dad's Dad died at the age of 70
from cancer so this means there is no family history.

I have heard that 4,800 here in the uk have HD out of the 60 Million population,
and 3% of cases have no family history and normally it is due to adoption or
previous generations not being diganoed due to dying early of other causes.

But adoption does not apply to me and previous generations have not died early.

But i have heard its not impossible to get HD from a new genetic mutation but
apparently theres only about a 1% chance of that happening.

So should i be worried at all about getting HD? is there any chance i could get
it?

Thank you for your time and for reading this email. :)


---------------------------------
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[Non-text portions of this message have been removed]

Absolutely right, April. Went to the funeral yesterday of our minister's wife.
She died of cancer on Monday morning, only 39. Lots of tears at the funeral, but
not for Arlene - she is where she has always wanted to be, with her Lord, and
she was very much at peace when she knew that she was going to die. Her only
concern was for her husband and children.

Tom
   ----- Original Message -----
   From: April Hynes
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Friday, November 26, 2004 1:28 AM
   Subject: Re: [One Big Huntingtons Family] SKIP


   Karl,

   never heard that before.  Don't worry......if you have no family
history.......as far as I'm aware......you have 0 chance of developing
Huntingtons.

   Your fine.  You have more chance of cancer, heart disease etc.  Plus......why
are you worrying what your going to die from?  We're all eventually all going to
die of SOMETHING.......I often find it odd how we all tend to ponder on HOW
we're going to meet our demise yet we barely care about what happens AFTER we
die.

   I'm at risk and am totally at peace knowing that whether it's a car accident,
a heart attack, cancer or HD.....one day.....I'll be home with Jesus.  And while
I'm here.........He gives me all of the joy I need

   Hope you have the same.


     ----- Original Message -----
     From: Karl Price<mailto:karlmprice@...>
     To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
     Sent: Tuesday, November 23, 2004 12:46 PM
     Subject: Re: [One Big Huntingtons Family] SKIP



     Hi

     someone told me that everyone has a chance of
     developing Huntington's disease.

     They told me that everyone has the huntingtin gene
     which everyone needs for proper development of the
     brain and they also said that sometimes someone can
     get a new mutation of the gene and develop HD with no
     family history.

     I worry about getting HD and i dont even know why i
     have no family history, im not adopted and no
     relatives have died young of other causes yet i still
     worry for some stupid reason, i probably have about a
     5% chance or something of getting HD.






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[Non-text portions of this message have been removed]

Karl,

never heard that before.  Don't worry......if you have no family
history.......as far as I'm aware......you have 0 chance of developing
Huntingtons.

Your fine.  You have more chance of cancer, heart disease etc.  Plus......why
are you worrying what your going to die from?  We're all eventually all going to
die of SOMETHING.......I often find it odd how we all tend to ponder on HOW
we're going to meet our demise yet we barely care about what happens AFTER we
die.

I'm at risk and am totally at peace knowing that whether it's a car accident, a
heart attack, cancer or HD.....one day.....I'll be home with Jesus.  And while
I'm here.........He gives me all of the joy I need

Hope you have the same.


   ----- Original Message -----
   From: Karl Price<mailto:karlmprice@...>
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 23, 2004 12:46 PM
   Subject: Re: [One Big Huntingtons Family] SKIP



   Hi

   someone told me that everyone has a chance of
   developing Huntington's disease.

   They told me that everyone has the huntingtin gene
   which everyone needs for proper development of the
   brain and they also said that sometimes someone can
   get a new mutation of the gene and develop HD with no
   family history.

   I worry about getting HD and i dont even know why i
   have no family history, im not adopted and no
   relatives have died young of other causes yet i still
   worry for some stupid reason, i probably have about a
   5% chance or something of getting HD.






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[Non-text portions of this message have been removed]

Hi

someone told me that everyone has a chance of
developing Huntington's disease.

They told me that everyone has the huntingtin gene
which everyone needs for proper development of the
brain and they also said that sometimes someone can
get a new mutation of the gene and develop HD with no
family history.

I worry about getting HD and i dont even know why i
have no family history, im not adopted and no
relatives have died young of other causes yet i still
worry for some stupid reason, i probably have about a
5% chance or something of getting HD.






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make your dream a reality.
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Hi Megan,

Welcome.  I am 31 years old and I am at risk also.  My 65 year old mother was
diagnosed with HD last year and she is in the beginning stages or Mid (not sure
which).  She is experiencing uncontrolled mild movement and is a bit off balance
but besides that......she's doing great.  Her 58 yr old sister is also a bit
more advanced and does experience some severe mood swings/irratablity/paranoia
about some things. Their 60 yr old brother is not showing signs of the disease.

My family has a late onset disease and at this time, I am married with 2
beautiful children.  I do not plan on testing at this time.  Maybe later.  If I
have it......I have it.  I'm not going to let that ruin my life.  My life is
determined by God, not a gene.  Also, I think of how freeing it would be to know
I was negative.  I think for the next few years.....I'm not going to worry about
it.

Welcome to our group!


----- Original Message -----
   From: TRACY BRADY<mailto:sweetncute_1963@...>
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Friday, November 19, 2004 9:17 AM
   Subject: Re: [One Big Huntingtons Family] Digest Number 157



   TOOO ALL!!!!!!!! PLEASE READ!! HD CAN SKIP A PERSON!! I HAVE HD AS WELL AS MY
BRO, MY SIS DOES NOT!! I WAS UPSET ABOUT WHAT WAS SAID IN HERE ABOUT IT CAN'T
SKIP!!! IT CAN TAKE MY WORD FOR IT I GOT CLEAN PEOPLE ON MY DAD'S SIDE!!! WE
HAVE BEEN ALL TESTED!! PLEASE FEEL FREE TO ASK ME ALL YOU WANT!!! IT'S HARD
ENOUGH TO DEAL WITH THIS CRAP WITH NOOO GOOD OUTLOOK ON LIFE!!!!   TRACY

  
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com> wrote:

   There are 2 messages in this issue.

   Topics in this digest:

   1. HD and EPA
   From: David McEvoy
   2. Re: finding friends
   From: "April Hynes"


   ________________________________________________________________________
   ________________________________________________________________________

   Message: 1
   Date: Wed, 17 Nov 2004 14:04:25 +0000 (GMT)
   From: David McEvoy
   Subject: HD and EPA

   Hello

   I run a website www.mind1st.co.uk<http://www.mind1st.co.uk/> that sells the
highest grade of pure Epa thats available today. Just recently a customer of
mine informed me that High strength EPA is used to treat or help with HD. The
lady informed me she was waiting for a new drug called lax 101 to be pushed
through and given drug status and in the mean time would give her husband our
90% EPA oil, she told me that this would be of interest to you. I hope I have
caused no offence as non was intended.You can gain more info from my web site
listed above.

   kind regards

   Dave Mcevoy



   ---------------------------------
   Win a castle for NYE with your mates and Yahoo! Messenger

   [Non-text portions of this message have been removed]



   ________________________________________________________________________
   ________________________________________________________________________

   Message: 2
   Date: Wed, 17 Nov 2004 14:52:09 -0500
   From: "April Hynes"
   Subject: Re: finding friends

   Hi Tom,

   Well I'm not sure really what CAG count my mom is. She was diagnosed with HD
by her neurologist but I don't think she had a blood test to confirm
it.........due to insurance reasons. I'm not sure what the cag counts mean
anyway? I haven't decided yet whether to test myself or not??
   ----- Original Message -----
   From: Tom Lister
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Monday, November 15, 2004 6:31 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi April,

   It was Helen's dad who had HD. He didn't realy start showing symptoms until
late middle age. His parents died (I believe) fairly young of non-HD causes, and
he had no other traceable relations, so we don't know much.

   Helen is 42, and (though this is subjective and difficult to judge) I think in
early middle stage. Her CAG is 46, which judging by her dad's progression is
probably higher than his was (expansion). Do you know what the typical CAG in
your family is?

   Regards

   Tom
   ----- Original Message -----
   From: April Hynes
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 16, 2004 4:22 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom,

   I'm reading your message and just wanted to ask you to investigate the age of
onset in your family. Who had hd?? A great grandparent? We have a late onset HD
gene so people don't start showing symptoms until in late 50's 60's. If your
grandparents are not showing signs of HD.......then your fine!

   It cant skip generations. It's passed down by parents and if you have the gene
you eventually develop HD unless you die of other causes beforehand.


   ----- Original Message -----
   From: Karl Price
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 16, 2004 9:55 AM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom

   thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
   I have more chance of winning the lottery then in england which is 14 million
to one than getting HD?
   I should not worry about HD if i have no family history should i?

   Hope to hear back from you soon.

   Thanks.


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Dear Tracy,

I think we need to clarify the meaning of the word "skip".   The HD gene can not
SKIP a generation.  The gene is passed down and a child of an HD positive person
is at a 50% risk.  If that child is fortunate to not inherit the hd
gene.......it CANNOT SKIP to the offspring of their child.

IT IS POSSIBLE, however, to say for example, an HD pos person have 5
children.........it may be that 3 out of those 5 children HAVE THE
GENE........and 2 DO NOT.  That is not skipping....it is just that 2 of those 5
children did not inherit the gene and they will not inherit the HD disease.

The future generations of an HD negative person is free of this disease.


Just to clarify
   ----- Original Message -----
   From: TRACY BRADY<mailto:sweetncute_1963@...>
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Friday, November 19, 2004 9:17 AM
   Subject: Re: [One Big Huntingtons Family] Digest Number 157



   TOOO ALL!!!!!!!! PLEASE READ!! HD CAN SKIP A PERSON!! I HAVE HD AS WELL AS MY
BRO, MY SIS DOES NOT!! I WAS UPSET ABOUT WHAT WAS SAID IN HERE ABOUT IT CAN'T
SKIP!!! IT CAN TAKE MY WORD FOR IT I GOT CLEAN PEOPLE ON MY DAD'S SIDE!!! WE
HAVE BEEN ALL TESTED!! PLEASE FEEL FREE TO ASK ME ALL YOU WANT!!! IT'S HARD
ENOUGH TO DEAL WITH THIS CRAP WITH NOOO GOOD OUTLOOK ON LIFE!!!!   TRACY

  
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com> wrote:

   There are 2 messages in this issue.

   Topics in this digest:

   1. HD and EPA
   From: David McEvoy
   2. Re: finding friends
   From: "April Hynes"


   ________________________________________________________________________
   ________________________________________________________________________

   Message: 1
   Date: Wed, 17 Nov 2004 14:04:25 +0000 (GMT)
   From: David McEvoy
   Subject: HD and EPA

   Hello

   I run a website www.mind1st.co.uk<http://www.mind1st.co.uk/> that sells the
highest grade of pure Epa thats available today. Just recently a customer of
mine informed me that High strength EPA is used to treat or help with HD. The
lady informed me she was waiting for a new drug called lax 101 to be pushed
through and given drug status and in the mean time would give her husband our
90% EPA oil, she told me that this would be of interest to you. I hope I have
caused no offence as non was intended.You can gain more info from my web site
listed above.

   kind regards

   Dave Mcevoy



   ---------------------------------
   Win a castle for NYE with your mates and Yahoo! Messenger

   [Non-text portions of this message have been removed]



   ________________________________________________________________________
   ________________________________________________________________________

   Message: 2
   Date: Wed, 17 Nov 2004 14:52:09 -0500
   From: "April Hynes"
   Subject: Re: finding friends

   Hi Tom,

   Well I'm not sure really what CAG count my mom is. She was diagnosed with HD
by her neurologist but I don't think she had a blood test to confirm
it.........due to insurance reasons. I'm not sure what the cag counts mean
anyway? I haven't decided yet whether to test myself or not??
   ----- Original Message -----
   From: Tom Lister
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Monday, November 15, 2004 6:31 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi April,

   It was Helen's dad who had HD. He didn't realy start showing symptoms until
late middle age. His parents died (I believe) fairly young of non-HD causes, and
he had no other traceable relations, so we don't know much.

   Helen is 42, and (though this is subjective and difficult to judge) I think in
early middle stage. Her CAG is 46, which judging by her dad's progression is
probably higher than his was (expansion). Do you know what the typical CAG in
your family is?

   Regards

   Tom
   ----- Original Message -----
   From: April Hynes
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 16, 2004 4:22 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom,

   I'm reading your message and just wanted to ask you to investigate the age of
onset in your family. Who had hd?? A great grandparent? We have a late onset HD
gene so people don't start showing symptoms until in late 50's 60's. If your
grandparents are not showing signs of HD.......then your fine!

   It cant skip generations. It's passed down by parents and if you have the gene
you eventually develop HD unless you die of other causes beforehand.


   ----- Original Message -----
   From: Karl Price
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 16, 2004 9:55 AM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom

   thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
   I have more chance of winning the lottery then in england which is 14 million
to one than getting HD?
   I should not worry about HD if i have no family history should i?

   Hope to hear back from you soon.

   Thanks.


   ---------------------------------
   Win a castle for NYE with your mates and Yahoo! Messenger

   [Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Hi Tracy,

I never said that it can't skip a PERSON, I said it can't skip a GENERATION.
Never intended to upset anyone. If your parent has HD then you have a 50/50
chance of having the Huntingtin gene, in your case you and your brother
inherited the gene, your sister didn't. What that means is that any children
that your sister has will not be at risk for Huntington's. The gene can't
skip, or miss out, a generation and then reappear in the grandkids.

Tom


----- Original Message -----
From: "TRACY BRADY" <sweetncute_1963@...>
To: <onebighuntingtonsfamily@yahoogroups.com>
Sent: Friday, November 19, 2004 2:17 PM
Subject: Re: [One Big Huntingtons Family] Digest Number 157



TOOO ALL!!!!!!!! PLEASE READ!! HD CAN SKIP A PERSON!! I HAVE HD AS WELL AS
MY BRO, MY SIS DOES NOT!! I WAS UPSET ABOUT WHAT WAS SAID IN HERE ABOUT IT
CAN'T SKIP!!! IT CAN TAKE MY WORD FOR IT I GOT CLEAN PEOPLE ON MY DAD'S
SIDE!!! WE HAVE BEEN ALL TESTED!! PLEASE FEEL FREE TO ASK ME ALL YOU WANT!!!
IT'S HARD ENOUGH TO DEAL WITH THIS CRAP WITH NOOO GOOD OUTLOOK ON LIFE!!!!
TRACY

onebighuntingtonsfamily@yahoogroups.com wrote:

There are 2 messages in this issue.

Topics in this digest:

1. HD and EPA
From: David McEvoy
2. Re: finding friends
From: "April Hynes"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Wed, 17 Nov 2004 14:04:25 +0000 (GMT)
From: David McEvoy
Subject: HD and EPA

Hello

I run a website www.mind1st.co.uk that sells the highest grade of pure Epa
thats available today. Just recently a customer of mine informed me that
High strength EPA is used to treat or help with HD. The lady informed me she
was waiting for a new drug called lax 101 to be pushed through and given
drug status and in the mean time would give her husband our 90% EPA oil, she
told me that this would be of interest to you. I hope I have caused no
offence as non was intended.You can gain more info from my web site listed
above.

kind regards

Dave Mcevoy



---------------------------------
Win a castle for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Wed, 17 Nov 2004 14:52:09 -0500
From: "April Hynes"
Subject: Re: finding friends

Hi Tom,

Well I'm not sure really what CAG count my mom is. She was diagnosed with HD
by her neurologist but I don't think she had a blood test to confirm
it.........due to insurance reasons. I'm not sure what the cag counts mean
anyway? I haven't decided yet whether to test myself or not??
----- Original Message -----
From: Tom Lister
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Monday, November 15, 2004 6:31 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi April,

It was Helen's dad who had HD. He didn't realy start showing symptoms until
late middle age. His parents died (I believe) fairly young of non-HD causes,
and he had no other traceable relations, so we don't know much.

Helen is 42, and (though this is subjective and difficult to judge) I think
in early middle stage. Her CAG is 46, which judging by her dad's progression
is probably higher than his was (expansion). Do you know what the typical
CAG in your family is?

Regards

Tom
----- Original Message -----
From: April Hynes
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 4:22 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom,

I'm reading your message and just wanted to ask you to investigate the age
of onset in your family. Who had hd?? A great grandparent? We have a late
onset HD gene so people don't start showing symptoms until in late 50's
60's. If your grandparents are not showing signs of HD.......then your fine!

It cant skip generations. It's passed down by parents and if you have the
gene you eventually develop HD unless you die of other causes beforehand.


----- Original Message -----
From: Karl Price
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 9:55 AM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom

thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
I have more chance of winning the lottery then in england which is 14
million to one than getting HD?
I should not worry about HD if i have no family history should i?

Hope to hear back from you soon.

Thanks.


---------------------------------
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Im not sure who the person was that said that it doesn't skip people..
but tracy's right on this one...

That's why they call us at risk... if we didn't have the chance of being
skipped.. they'd just tell us we have hd!.  (and that's y its 50/50 u
either have it or u don't!)

-Tara

-----Original Message-----
From: TRACY BRADY [mailto:sweetncute_1963@...]
Sent: Friday, November 19, 2004 9:18 AM
To: onebighuntingtonsfamily@yahoogroups.com
Subject: Re: [One Big Huntingtons Family] Digest Number 157


TOOO ALL!!!!!!!! PLEASE READ!! HD CAN SKIP A PERSON!! I HAVE HD AS WELL
AS MY BRO, MY SIS DOES NOT!! I WAS UPSET ABOUT WHAT WAS SAID IN HERE
ABOUT IT CAN'T SKIP!!! IT CAN TAKE MY WORD FOR IT I GOT CLEAN PEOPLE ON
MY DAD'S SIDE!!! WE HAVE BEEN ALL TESTED!! PLEASE FEEL FREE TO ASK ME
ALL YOU WANT!!! IT'S HARD ENOUGH TO DEAL WITH THIS CRAP WITH NOOO GOOD
OUTLOOK ON LIFE!!!!   TRACY

onebighuntingtonsfamily@yahoogroups.com wrote:

There are 2 messages in this issue.

Topics in this digest:

1. HD and EPA
From: David McEvoy
2. Re: finding friends
From: "April Hynes"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Wed, 17 Nov 2004 14:04:25 +0000 (GMT)
From: David McEvoy
Subject: HD and EPA

Hello

I run a website www.mind1st.co.uk that sells the highest grade of pure
Epa thats available today. Just recently a customer of mine informed me
that High strength EPA is used to treat or help with HD. The lady
informed me she was waiting for a new drug called lax 101 to be pushed
through and given drug status and in the mean time would give her
husband our 90% EPA oil, she told me that this would be of interest to
you. I hope I have caused no offence as non was intended.You can gain
more info from my web site listed above.

kind regards

Dave Mcevoy



---------------------------------
Win a castle for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Wed, 17 Nov 2004 14:52:09 -0500
From: "April Hynes"
Subject: Re: finding friends

Hi Tom,

Well I'm not sure really what CAG count my mom is. She was diagnosed
with HD by her neurologist but I don't think she had a blood test to
confirm it.........due to insurance reasons. I'm not sure what the cag
counts mean anyway? I haven't decided yet whether to test myself or
not??
----- Original Message -----
From: Tom Lister
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Monday, November 15, 2004 6:31 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi April,

It was Helen's dad who had HD. He didn't realy start showing symptoms
until late middle age. His parents died (I believe) fairly young of
non-HD causes, and he had no other traceable relations, so we don't know
much.

Helen is 42, and (though this is subjective and difficult to judge) I
think in early middle stage. Her CAG is 46, which judging by her dad's
progression is probably higher than his was (expansion). Do you know
what the typical CAG in your family is?

Regards

Tom
----- Original Message -----
From: April Hynes
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 4:22 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom,

I'm reading your message and just wanted to ask you to investigate the
age of onset in your family. Who had hd?? A great grandparent? We have a
late onset HD gene so people don't start showing symptoms until in late
50's 60's. If your grandparents are not showing signs of HD.......then
your fine!

It cant skip generations. It's passed down by parents and if you have
the gene you eventually develop HD unless you die of other causes
beforehand.


----- Original Message -----
From: Karl Price
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 9:55 AM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom

thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not
worry about it?
I have more chance of winning the lottery then in england which is 14
million to one than getting HD?
I should not worry about HD if i have no family history should i?

Hope to hear back from you soon.

Thanks.


---------------------------------
Win a castle for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]


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TOOO ALL!!!!!!!! PLEASE READ!! HD CAN SKIP A PERSON!! I HAVE HD AS WELL AS MY
BRO, MY SIS DOES NOT!! I WAS UPSET ABOUT WHAT WAS SAID IN HERE ABOUT IT CAN'T
SKIP!!! IT CAN TAKE MY WORD FOR IT I GOT CLEAN PEOPLE ON MY DAD'S SIDE!!! WE
HAVE BEEN ALL TESTED!! PLEASE FEEL FREE TO ASK ME ALL YOU WANT!!! IT'S HARD
ENOUGH TO DEAL WITH THIS CRAP WITH NOOO GOOD OUTLOOK ON LIFE!!!!   TRACY

onebighuntingtonsfamily@yahoogroups.com wrote:

There are 2 messages in this issue.

Topics in this digest:

1. HD and EPA
From: David McEvoy
2. Re: finding friends
From: "April Hynes"


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Wed, 17 Nov 2004 14:04:25 +0000 (GMT)
From: David McEvoy
Subject: HD and EPA

Hello

I run a website www.mind1st.co.uk that sells the highest grade of pure Epa thats
available today. Just recently a customer of mine informed me that High strength
EPA is used to treat or help with HD. The lady informed me she was waiting for a
new drug called lax 101 to be pushed through and given drug status and in the
mean time would give her husband our 90% EPA oil, she told me that this would be
of interest to you. I hope I have caused no offence as non was intended.You can
gain more info from my web site listed above.

kind regards

Dave Mcevoy



---------------------------------
Win a castle for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Wed, 17 Nov 2004 14:52:09 -0500
From: "April Hynes"
Subject: Re: finding friends

Hi Tom,

Well I'm not sure really what CAG count my mom is. She was diagnosed with HD by
her neurologist but I don't think she had a blood test to confirm it.........due
to insurance reasons. I'm not sure what the cag counts mean anyway? I haven't
decided yet whether to test myself or not??
----- Original Message -----
From: Tom Lister
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Monday, November 15, 2004 6:31 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi April,

It was Helen's dad who had HD. He didn't realy start showing symptoms until late
middle age. His parents died (I believe) fairly young of non-HD causes, and he
had no other traceable relations, so we don't know much.

Helen is 42, and (though this is subjective and difficult to judge) I think in
early middle stage. Her CAG is 46, which judging by her dad's progression is
probably higher than his was (expansion). Do you know what the typical CAG in
your family is?

Regards

Tom
----- Original Message -----
From: April Hynes
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 4:22 PM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom,

I'm reading your message and just wanted to ask you to investigate the age of
onset in your family. Who had hd?? A great grandparent? We have a late onset HD
gene so people don't start showing symptoms until in late 50's 60's. If your
grandparents are not showing signs of HD.......then your fine!

It cant skip generations. It's passed down by parents and if you have the gene
you eventually develop HD unless you die of other causes beforehand.


----- Original Message -----
From: Karl Price
To: onebighuntingtonsfamily@yahoogroups.com
Sent: Tuesday, November 16, 2004 9:55 AM
Subject: Re: [One Big Huntingtons Family] finding friends


Hi Tom

thanks for your reply sorry to ask all those questions so what you are basically
saying to me is that i should never get HD and i should not worry about it?
I have more chance of winning the lottery then in england which is 14 million to
one than getting HD?
I should not worry about HD if i have no family history should i?

Hope to hear back from you soon.

Thanks.


---------------------------------
Win a castle for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Hi April,

The CAG count refers to the number of times the sequence "CAG" appears at the
end of the Huntingtin gene. It normally repeats up to 34 times (a typical repeat
would be maybe 13-18) but some genes have longer repeats. If it repeats more
than 35 times,  then that person will develop Huntington's though at that end of
the scale they would quite likely die of natural causes before any obvious
symptoms appeared. As the repeat rate increases so the symptoms tend to appear
earlier. My wife Helen has a repeat of 46 and has been showing symptoms for some
time now, though we didn't know about the Huntington's until last year. She is
42 years old.

A great site for general information about repeats, etc, is:

http://hdlighthouse.org.

Hope that helps!

Best wishes

Tom

   ----- Original Message -----
   From: April Hynes
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Wednesday, November 17, 2004 7:52 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom,

   Well I'm not sure really what CAG count my mom is.  She was diagnosed with HD
by her neurologist but I don't think she had a blood test to confirm
it.........due to insurance reasons.  I'm not sure what the cag counts mean
anyway?  I haven't decided yet whether to test myself or not??



[Non-text portions of this message have been removed]

Hey people! I am pretty new to the group and I don't mean to be annoying, but
I wanted to let all of you know I finally got my webcam back. It took a while
to repair, but everything is running great now, and the picture is crystal
clear. The repair guy also told me that he added some new software to allow
me to talk live to those watching me! So if any of you guys want to chat
come try it out on my new homepage :)

http://www.amateurhope.com/WetnWaitin18/




[Non-text portions of this message have been removed]

Hi Tom,

Well I'm not sure really what CAG count my mom is.  She was diagnosed with HD by
her neurologist but I don't think she had a blood test to confirm it.........due
to insurance reasons.  I'm not sure what the cag counts mean anyway?  I haven't
decided yet whether to test myself or not??
   ----- Original Message -----
   From: Tom Lister<mailto:tom@...>
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Monday, November 15, 2004 6:31 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi April,

   It was Helen's dad who had HD. He didn't realy start showing symptoms until
late middle age. His parents died (I believe) fairly young of non-HD causes, and
he had no other traceable relations, so we don't know much.

   Helen is 42, and (though this is subjective and difficult to judge) I think in
early middle stage. Her CAG is 46, which judging by her dad's progression is
probably higher than his was (expansion).  Do you know what the typical CAG in
your family is?

   Regards

   Tom
     ----- Original Message -----
     From: April Hynes
     To: onebighuntingtonsfamily@yahoogroups.com
     Sent: Tuesday, November 16, 2004 4:22 PM
     Subject: Re: [One Big Huntingtons Family] finding friends


     Hi Tom,

     I'm reading your message and just wanted to ask you to investigate the age
of onset in your family.  Who had hd?? A great grandparent?  We have a late
onset HD gene so people don't start showing symptoms until in late 50's 60's. 
If your grandparents are not showing signs of HD.......then your fine!

     It cant skip generations. It's passed down by parents and if you have the
gene you eventually develop HD unless you die of other causes beforehand.


       ----- Original Message -----
       From: Karl Price<mailto:karlmprice@...>
       To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
       Sent: Tuesday, November 16, 2004 9:55 AM
       Subject: Re: [One Big Huntingtons Family] finding friends


       Hi Tom

       thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
       I have more chance of winning the lottery then in england which is 14
million to one than getting HD?
       I should not worry about HD if i have no family history should i?

       Hope to hear back from you soon.

       Thanks.


       ---------------------------------
       Win a castle  for NYE with your mates and Yahoo! Messenger

       [Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Hello

I run a website www.mind1st.co.uk that sells the highest grade of pure Epa thats
available today. Just recently a customer of mine informed me that High strength
EPA is used to treat or help with HD. The lady informed me she was waiting for a
new drug called lax 101 to be pushed through and given drug status and in the
mean time would give her husband our 90% EPA oil, she told me that this would be
of interest to you.  I hope I have caused no offence as non was intended.You can
gain more info from my web site listed above.

kind regards

Dave Mcevoy



---------------------------------
Win a castle  for NYE with your mates and Yahoo! Messenger

[Non-text portions of this message have been removed]

Hi Karl,

No bother to answer questions. I think that the chances that what is troubling
you is due to HD, given your background, is vanishingly small.  I hope you get
to the bottom of it soon, and that it proves easy to sort out.

Best Wishes

Tom
   ----- Original Message -----
   From: Karl Price
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Tuesday, November 16, 2004 2:55 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom

   thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
   I have more chance of winning the lottery then in england which is 14 million
to one than getting HD?
   I should not worry about HD if i have no family history should i?

   Hope to hear back from you soon.

   Thanks.


   ---------------------------------
   Win a castle  for NYE with your mates and Yahoo! Messenger

   [Non-text portions of this message have been removed]


         Yahoo! Groups Sponsor
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     a.. To visit your group on the web, go to:
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[Non-text portions of this message have been removed]

Hi April,

It was Helen's dad who had HD. He didn't realy start showing symptoms until late
middle age. His parents died (I believe) fairly young of non-HD causes, and he
had no other traceable relations, so we don't know much.

Helen is 42, and (though this is subjective and difficult to judge) I think in
early middle stage. Her CAG is 46, which judging by her dad's progression is
probably higher than his was (expansion).  Do you know what the typical CAG in
your family is?

Regards

Tom
   ----- Original Message -----
   From: April Hynes
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Tuesday, November 16, 2004 4:22 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom,

   I'm reading your message and just wanted to ask you to investigate the age of
onset in your family.  Who had hd?? A great grandparent?  We have a late onset
HD gene so people don't start showing symptoms until in late 50's 60's.  If your
grandparents are not showing signs of HD.......then your fine!

   It cant skip generations. It's passed down by parents and if you have the gene
you eventually develop HD unless you die of other causes beforehand.


     ----- Original Message -----
     From: Karl Price<mailto:karlmprice@...>
     To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
     Sent: Tuesday, November 16, 2004 9:55 AM
     Subject: Re: [One Big Huntingtons Family] finding friends


     Hi Tom

     thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
     I have more chance of winning the lottery then in england which is 14
million to one than getting HD?
     I should not worry about HD if i have no family history should i?

     Hope to hear back from you soon.

     Thanks.


     ---------------------------------
     Win a castle  for NYE with your mates and Yahoo! Messenger

     [Non-text portions of this message have been removed]


           Yahoo! Groups Sponsor
                 ADVERTISEMENT
                
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[Non-text portions of this message have been removed]

Hi Tom,

I'm reading your message and just wanted to ask you to investigate the age of
onset in your family.  Who had hd?? A great grandparent?  We have a late onset
HD gene so people don't start showing symptoms until in late 50's 60's.  If your
grandparents are not showing signs of HD.......then your fine!

It cant skip generations. It's passed down by parents and if you have the gene
you eventually develop HD unless you die of other causes beforehand.


   ----- Original Message -----
   From: Karl Price<mailto:karlmprice@...>
   To:
onebighuntingtonsfamily@yahoogroups.com<mailto:onebighuntingtonsfamily@yahoogrou\
ps.com>
   Sent: Tuesday, November 16, 2004 9:55 AM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom

   thanks for your reply sorry to ask all those questions so what you are
basically saying to me is that i should never get HD and i should not worry
about it?
   I have more chance of winning the lottery then in england which is 14 million
to one than getting HD?
   I should not worry about HD if i have no family history should i?

   Hope to hear back from you soon.

   Thanks.


   ---------------------------------
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[Non-text portions of this message have been removed]

Hi Tom

thanks for your reply sorry to ask all those questions so what you are basically
saying to me is that i should never get HD and i should not worry about it?
I have more chance of winning the lottery then in england which is 14 million to
one than getting HD?
I should not worry about HD if i have no family history should i?

Hope to hear back from you soon.

Thanks.


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[Non-text portions of this message have been removed]

Gosh Karl, I'm not sure that I'm the right person to answer all those questions,
but I will do my best!

1. Yes, your family history shows that Hd isn't present.

2. The gene (particularly when passed down on the male side) can "expand" its
CAG repeat, so theoretically a father with a CAG of 34 (not HD) could pass on a
CAG of 37 (Hd) to his child. However the odds against that are huge. Not 5% but
(a wild guess here) more like 0.00001%,or one in a hundred  million.

3. No, if you have the Hd gene you have Hd. If the CAG repeat is very low, you
might die of natural causes before obvious symptoms appear, but non-the-less,
you would still have Hd.

Hope that helps!

Best Wishes

Tom
   ----- Original Message -----
   From: Karl Price
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Monday, November 15, 2004 11:56 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tom

   Thanks for your message, i am really sorry to hear about what has happened
with your wife it does not sound good at all when things like that happen.

   But if my parents are in their 40's and both sets of my grandparents are in
their 60's and all of them are quite healthy and no-one had HD that means that i
dont have a family history of the disease and cannot get H.D?

   I know people with H.D can get it with no family history but its usually
because they are adopted or because relatives died early of other causes first
and H.D was not diagnosed.

   So as there is no family history in my family, and no-one has died early and
im not adopted does this mean that i will never get H.D? or is there something
like a 5% chance that i will get it?

   Can people carry the H.D gene and not get the disease say my parents had the
gene but not the disease but i got the gene and the disease?

   Any answers to my questions would be much appreciated.



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[Non-text portions of this message have been removed]

Hi Tom

Thanks for your message, i am really sorry to hear about what has happened with
your wife it does not sound good at all when things like that happen.

But if my parents are in their 40's and both sets of my grandparents are in
their 60's and all of them are quite healthy and no-one had HD that means that i
dont have a family history of the disease and cannot get H.D?

I know people with H.D can get it with no family history but its usually because
they are adopted or because relatives died early of other causes first and H.D
was not diagnosed.

So as there is no family history in my family, and no-one has died early and im
not adopted does this mean that i will never get H.D? or is there something like
a 5% chance that i will get it?

Can people carry the H.D gene and not get the disease say my parents had the
gene but not the disease but i got the gene and the disease?

Any answers to my questions would be much appreciated.



---------------------------------
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make your dream a reality.

[Non-text portions of this message have been removed]

Hi Karl

My wife's father walked out on Helen and her mum when she was two, and she had
no further contact with him until she was in her mid-thirties. She met him
couple of times, then, and though he came across as slightly odd we had no
reason to suppose that there was actually anything seriously wrong with him. He
died 3 years ago. This time last year my wife's physical symptoms got bad enough
for  (finally!) the GP sent her to see a Neuro. Just before we were due to go,
her mother 'phoned and confessed that on Helen's dad's Death Certificate, the
hospital had put "Huntington's Disease".  She had been told by his second wife,
but kept this from us for two years, even though she knew that I was desperatly
concerned about Helen's mental health, and our family was in complete chaos.

We had tried for children, but as we never managed any we adopted two. This is
good because they are not at risk. This is bad because these kids had enough
problems when they came, and Helen's deterioration led to what became emotional
child abuse of our daughter.

So in our case there was no "history" of Huntington's (her father had no
siblings, and his parents had died fairly young apparently of non-hd related
causes),  and we only didn't have children by the grace of God not for want of
trying.. :-)

Huntington's for many families is kept as a dark secret, but it is also possible
to be completely unaware of it.

Tom


   ----- Original Message -----
   From: Karl Price
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Saturday, November 13, 2004 8:20 PM
   Subject: Re: [One Big Huntingtons Family] finding friends


   Hi Tracy

   I am very sorry to hear about your situation.
   How comes you didnt know that your husband at the time had huntingtons? who
did he inherit it from? did he not know he was at risk before you met or before
you had kids as if it was in his family he would have known unless he didnt want
to tell anyone about it.
   You can talk to me about it and i will try and help you in anyway i can.

   Take care and i hope to hear back from you soon


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[Non-text portions of this message have been removed]

Hi Tracy

I am very sorry to hear about your situation.
How comes you didnt know that your husband at the time had huntingtons? who did
he inherit it from? did he not know he was at risk before you met or before you
had kids as if it was in his family he would have known unless he didnt want to
tell anyone about it.
You can talk to me about it and i will try and help you in anyway i can.

Take care and i hope to hear back from you soon


---------------------------------
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[Non-text portions of this message have been removed]

Hey people! I am pretty new to the group and I don't mean to be annoying, but
I wanted to let all of you know I finally got my webcam back. It took a while
to repair, but everything is running great now, and the picture is crystal
clear. The repair guy also told me that he added some new software to allow
me to talk live to those watching me! So if any of you guys want to chat
come try it out on my new homepage :)

http://www.amateurhope.com/WetnWaitin18/




[Non-text portions of this message have been removed]

hi, my name is tracy and i live in Plymouth ,England.

I have three sons who are at risk from Huntingtons, ages 16, 13 and
11.
My 16 year old is finding it very hard to get his head around the
fact that he may have this disease.
Iget depressed at the fact that i unknowingly had kids not realising
that my husband at the time had huntingtons, he had no idea either.
I would like to find friends to talk to who are in the same position
as me or who could give me advice for my eldest don
many thanks
tracy

I knew if it was out there you guys would track it down! Sounds as if this is
what was being reported - thanks Jean and Marsha!

Tom
   ----- Original Message -----
   From: Jean E. Miller
   To: HD Caregivers
   Sent: Saturday, November 06, 2004 7:54 AM
   Subject: [HDCaregivers] Re: Cure found? [HD Blog 10/23 Article]


   The first thing that popped up when I just did a rearch was on the HD Blog
which has the article.  Sounds like what someone was reporting on the HD Support
Club message board?  Will search some more!

   HD Blog [scroll down to 10/23] 
http://www.huntingtons.info/MT/archives/2004/10/
   October 23, 2004
   NeurotrophinCell Press Release
   Here's Living Cell Technologies official press release on their announcement
that NeurotrophinCell reduced cell damage 86% in their Huntington's Disease
model.

   The press release:

   LCT treatment protects the brain from damage by Huntington's disease

   22 October 2004, Australia:

   Living Cell Technologies (ASX: LCT), has today released results of
pre-clinical studies demonstrating that its specialised therapy protects nerve
cells in the brain from damage caused by conditions similar to Huntington's
disease. Animals receiving LCT's treatment, NeurotrophinCell, showed 86 per cent
less damage to the brain and showed dramatically improved use of their limbs.

   This is the first time that technology of this kind has been proven in a
controlled pre-clinical setting to prevent the degeneration of the brain due to
Huntington's disease-like conditions. The details and data are to be presented
at the Society for Neuroscience annual conference in San Diego this weekend and
published in NeuroReport in November.

   Huntington's disease is a devastating and fatal neurodegenerative condition
that can be diagnosed very early in life, before symptoms appear, but for which
there is no cure or intervention strategy available.

   "These findings have major implications for enabling treatment of human
neurodegenerative diseases such as Huntington's and stroke," said Dr. Dwaine
Emerich, VP of Research at LCT BioPharma Inc1 and co-author of the paper
detailing the findings.

   "What we have done is successfully implant new choroid plexus cells (the cells
that produce cerebral spinal fluid and a number of factors important for the
health and survival of the brain) thereby protecting specific areas of the brain
from damage" continued Dr. Emerich.

   In LCT's proprietary product, NeurotrophinCell, the choroid plexus cells are
encapsulated in a clear capsule derived from algae. This encapsulation hides the
cells from the patient's immune system yet allows the cells to receive nutrients
and chemical signals necessary for functionality and survival."

   "NeurotrophinCell has effectively shown the ability of LCT's technology, to
protect brain tissue that would otherwise die, potentially forestalling or
preventing the debilitating consequences of this disease," said Alfred
Vasconcellos, LCT BioPharma's CEO.



   ----




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[Non-text portions of this message have been removed]

Hey guys, I am new to the group and just wanted to say hi!

If you would like to check out a pic of me I took yesterday, or talk to me check
my profile our over here: http://www.datebywebcam.com/profiles_bubiboo.php.

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[Non-text portions of this message have been removed]

Hi Suzie,

Helen and I are in Aultbea, Scottish Highlands. I am no expert, but from what I
understand there is no way to predict when symptoms will appear. Helen is taking
various supplements and you could start taking them straight away. She is
currently taking

Creatine Monohydrate
Acetyl-L-Carnitine
Alpha-Lipoic Acid
Cod Liver Oil
Zinc
Multi-vitamins with Iron.

These are all available in health stores, or on the internet. Try

http://www.healthspan.co.uk

There is no scientific proof that any of these delay the onset of symptoms, but
a lot of caregivers have said that they seem to help. Also regular physical
exercise does help delay onset, as does keeping mentaly active. See

http://hdlighthouse.org/  for more information on supplements.

There are others  with HD in N. Ireland, and the web site of the N.Ireland HD
Association is:

http://northernirelandhd.tripod.com/

If you visit that site there is contact information and you can sign up for
e-mails, etc. They say on the site that there are monthly support group meetings
- there is nothing like actually meeting people who are dealing with the same
problems, and who really understand what you are going through.

Every day seems to bring more news about research into HD, and more hope for a
cure - my wife's Consultant is predicting a cure within 10 years. Of course no
one can know if this will happen, but there is hope.

God bless,

Tom and Helen

   ----- Original Message -----
   From: suzie Moore
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Wednesday, November 03, 2004 12:50 PM
   Subject: Re: [One Big Huntingtons Family] in need of a friend


   Hi Tom

   Thanks very much from replying to my email I'm from Lisbon in N'Ireland. I
don't know anybody over hear with hd. It feels like a time boom ticking away not
knowing when it's going to start. is it yr 30's it starts is there a drug out
the to pros-pone it from starting or do ya have to have symptoms before ya can
start taking tables

   Suzie

   Tom Lister <tom@...> wrote:
   Hi Suzie,

   I am sorry for the reason that you have had to post your message, but the good
news is that these days there is a lot of information available about HD on the
web, and several good chat groups with people willing and able to share their
knowledge and experience.

   I am full-time caregiver for my wife, who has HD. I have found the following
places to be good for information, or asking questions:

   http://hdlighthouse.org/  (This site has loads of information, but some of the
opinions and "treatments" are not mainstream...)

   http://www.hdac.org/huntdis/index.html

   http://www.hda.org.uk/   (UK organisation - don't know where you live...)

   http://www.hdsa.org/   (US organisation)

   And a great chat group with MASSIVE collective experience of Huntington's is:

   HDCaregivers@yahoogroups.com     Don't be put off by the "Caregivers" bit,
these folk are amazingly friendly and very helpful - sign up for it!

   You don't say what your "CAG" repeat is but generally  no two people have the
same symptoms or develop symptoms at the same time even if they have the same
CAG repeat. There are a number of supplements which my wife takes, which are
thought to help delay the onset/progress of symptoms, you can find details on
the "Lighthouse" site.

   I would recommend that you sign up to the HDCaregivers chat group and post
this message there as a first step.

   I would be happy to answer any questions that you have, and if you would
prefer  to correspond with someone who has HD, my wife would be happy to share
with you.

   Regards

   Tom and Helen Lister


     ----- Original Message -----
     From: suzbab27
     To: onebighuntingtonsfamily@yahoogroups.com
     Sent: Tuesday, November 02, 2004 5:41 PM
     Subject: [One Big Huntingtons Family] in need of a friend



     HI

     My name is Suzie I'm new to all this. I'm 27 married with two kids.
     HD has been in my family for as long as i can remember my
     granmother,antie and my own mother has died of this thing. I got the
     test done when i was 16yrs old and was told i had the same size of
     gean as my mum had she had a really bad time with it she spent the
     last 10 yrs of her live very ill in a nursing home. I don't know much
     about this HD i would like to find some one out there who can help me
     through this there is so much i would love to now my mum had it for a
     really long time 23yrs she died two yrs ago. she got HD in her early
     30's does this mean i'm going to start sign's off it soon i'm scared
     i have no body i can talk to about this i'm in need of a friend.

     Suzie




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[Non-text portions of this message have been removed]

Hi Tom

Thanks very much from replying to my email I'm from Lisbon in N'Ireland. I don't
know anybody over hear with hd. It feels like a time boom ticking away not
knowing when it's going to start. is it yr 30's it starts is there a drug out
the to pros-pone it from starting or do ya have to have symptoms before ya can
start taking tables

Suzie

Tom Lister <tom@...> wrote:
Hi Suzie,

I am sorry for the reason that you have had to post your message, but the good
news is that these days there is a lot of information available about HD on the
web, and several good chat groups with people willing and able to share their
knowledge and experience.

I am full-time caregiver for my wife, who has HD. I have found the following
places to be good for information, or asking questions:

http://hdlighthouse.org/  (This site has loads of information, but some of the
opinions and "treatments" are not mainstream...)

http://www.hdac.org/huntdis/index.html

http://www.hda.org.uk/   (UK organisation - don't know where you live...)

http://www.hdsa.org/   (US organisation)

And a great chat group with MASSIVE collective experience of Huntington's is:

HDCaregivers@yahoogroups.com     Don't be put off by the "Caregivers" bit, these
folk are amazingly friendly and very helpful - sign up for it!

You don't say what your "CAG" repeat is but generally  no two people have the
same symptoms or develop symptoms at the same time even if they have the same
CAG repeat. There are a number of supplements which my wife takes, which are
thought to help delay the onset/progress of symptoms, you can find details on
the "Lighthouse" site.

I would recommend that you sign up to the HDCaregivers chat group and post this
message there as a first step.

I would be happy to answer any questions that you have, and if you would prefer 
to correspond with someone who has HD, my wife would be happy to share with you.

Regards

Tom and Helen Lister


   ----- Original Message -----
   From: suzbab27
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Tuesday, November 02, 2004 5:41 PM
   Subject: [One Big Huntingtons Family] in need of a friend



   HI

   My name is Suzie I'm new to all this. I'm 27 married with two kids.
   HD has been in my family for as long as i can remember my
   granmother,antie and my own mother has died of this thing. I got the
   test done when i was 16yrs old and was told i had the same size of
   gean as my mum had she had a really bad time with it she spent the
   last 10 yrs of her live very ill in a nursing home. I don't know much
   about this HD i would like to find some one out there who can help me
   through this there is so much i would love to now my mum had it for a
   really long time 23yrs she died two yrs ago. she got HD in her early
   30's does this mean i'm going to start sign's off it soon i'm scared
   i have no body i can talk to about this i'm in need of a friend.

   Suzie




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[Non-text portions of this message have been removed]


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[Non-text portions of this message have been removed]

Hi Suzie,

I am sorry for the reason that you have had to post your message, but the good
news is that these days there is a lot of information available about HD on the
web, and several good chat groups with people willing and able to share their
knowledge and experience.

I am full-time caregiver for my wife, who has HD. I have found the following
places to be good for information, or asking questions:

http://hdlighthouse.org/  (This site has loads of information, but some of the
opinions and "treatments" are not mainstream...)

http://www.hdac.org/huntdis/index.html

http://www.hda.org.uk/   (UK organisation - don't know where you live...)

http://www.hdsa.org/   (US organisation)

And a great chat group with MASSIVE collective experience of Huntington's is:

HDCaregivers@yahoogroups.com     Don't be put off by the "Caregivers" bit, these
folk are amazingly friendly and very helpful - sign up for it!

You don't say what your "CAG" repeat is but generally  no two people have the
same symptoms or develop symptoms at the same time even if they have the same
CAG repeat. There are a number of supplements which my wife takes, which are
thought to help delay the onset/progress of symptoms, you can find details on
the "Lighthouse" site.

I would recommend that you sign up to the HDCaregivers chat group and post this
message there as a first step.

I would be happy to answer any questions that you have, and if you would prefer 
to correspond with someone who has HD, my wife would be happy to share with you.

Regards

Tom and Helen Lister


   ----- Original Message -----
   From: suzbab27
   To: onebighuntingtonsfamily@yahoogroups.com
   Sent: Tuesday, November 02, 2004 5:41 PM
   Subject: [One Big Huntingtons Family] in need of a friend



   HI

   My name is Suzie I'm new to all this. I'm 27 married with two kids.
   HD has been in my family for as long as i can remember my
   granmother,antie and my own mother has died of this thing. I got the
   test done when i was 16yrs old and was told i had the same size of
   gean as my mum had she had a really bad time with it she spent the
   last 10 yrs of her live very ill in a nursing home. I don't know much
   about this HD i would like to find some one out there who can help me
   through this there is so much i would love to now my mum had it for a
   really long time 23yrs she died two yrs ago. she got HD in her early
   30's does this mean i'm going to start sign's off it soon i'm scared
   i have no body i can talk to about this i'm in need of a friend.

   Suzie




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[Non-text portions of this message have been removed]

HI

My name is Suzie I'm new to all this. I'm 27 married with two kids.
HD has been in my family for as long as i can remember my
granmother,antie and my own mother has died of this thing. I got the
test done when i was 16yrs old and was told i had the same size of
gean as my mum had she had a really bad time with it she spent the
last 10 yrs of her live very ill in a nursing home. I don't know much
about this HD i would like to find some one out there who can help me
through this there is so much i would love to now my mum had it for a
really long time 23yrs she died two yrs ago. she got HD in her early
30's does this mean i'm going to start sign's off it soon i'm scared
i have no body i can talk to about this i'm in need of a friend.

Suzie