Hey,

I don't write on this list very often, but let me tell u a bit about my
family history..

My maternal grandmother has tested pos for hd.. she is in her late 70s
and is experiencing mid-very beginning late stage hd.

She has 4 sisters who have also tested positive for hd, and are in their
late 70s, however none of them are showing any symptoms what so ever.

And its very possible that they will die of something else before
showing signs of hd.

My grandmother had 1 brother who died in his early 60s of hd...

My great grandmother they have determined also had hd, she died in her
90s in the very early stages of the disease.

Hdlighthouse shows some info on this...
http://hdlighthouse.org/abouthd/cag/updates/0029cagvonset.shtml

also theres more things about cag here
http://www.hdlighthouse.org/abouthd/cag/

on this page
http://www.hdlighthouse.org/diagnosis/cag/updates/0029cagvonset.shtml
at the top it states.. HD Lighthouse Editors Comment: For a CAG count of
41, one person had onset at 25 years of age, another had onset at 81
years of age. Keep this in mind while looking at the table below.

Maybe this will help a bit.

-Tara

-----Original Message-----
From: Mike [mailto:co_datamodeler@...]
Sent: Wednesday, June 23, 2004 4:11 AM
To: huntingtonsdiseasesupportclub@yahoogroups.com
Subject: [Huntingtons Disease Support Club] Request: Information about
first-time HD in the family

I have been a subscriber to this group for eight months or so, but this
is my
first post. First, I want to thank everyone for their willingness to
share
their stories and open their lives to the rest of the group. Through
you, I
have learned much about HD. But even more, your strength is an
inspiration,
and I want to commend you for your courage and resolve in the face of
this
terrible disease. You bolster us in our down times, and you should
never doubt
your influence and the power of your words.

Now for my request: my situation seems to be different than most others
in
that HD just recently manifested itself in my family. Going back as
many
generations as we can, we can find no evidence of any member having the
disease, and most members lived well into their 70s. For example, my
mother
will be 72 this year and is still a healthy, robust woman. Last year,
her
younger sister passed away after exhibiting the classic signs of chorea
and
dementia. For these reasons, the autopsy included a genetic screening,
and she
was found to have the disease. Since then, one of her children has been
tested
and has also been found to be at risk (her doctor said her CAG numbers
indicate
that she will develop HD, most likely as she approaches her 60s). My
mother
and aunt, who shared a father, also had three older half-siblings, all
of whom
died in their 70s or 80s and none of whom exhibited any of the symptoms.
This
would seem to indicate that their father was the source of the
inheritance,
but, as he died in 1950 (also in his late 70s), it's impossible to do
any
screening (or to do a paternity test to ensure that he truly was the
father for
both girls). And, as he fathered only his two daughters, my mother is
the sole
living descendent. To complicate matters further, my mother is from
Germany,
and all of her family still lives there, making the sharing of medical
records
a tad difficult.

I have two younger sisters (I'm 44; they're 39 and 42) and, while none
of us
are concerned about developing HD, we were wondering if anyone else on
the list
is a first or second generation HD family. And, if so, if they have any
insight on how this disease "popped up" in their genetic pool (slow
mutation
through the generations until it hit a critical point, etc.).

And when I say that we're not concerned, I don't mean to minimize or in
any way
trivialize the seriousness of this disease. Both of my sisters have
multiple
sclerosis (the older one is in the latter stages and is a virtual
invalid), and
my doctor believes that I might also, so we're dealing with other
health-related demons. Our lack of concern over HD is more a reflection
on the
unlikelihood that any of us will live long enough for the disease to
appear (if
we indeed have the genetic inclination) than anything else.

Interestingly enough, we're also the first generation in the family to
have MS,
and though MS is not known to have a genetic basis (but there are
suspicions),
I would be interested in hearing any opinions on the possible link
between the
two diseases (or between HD and any other disease, for that matter).

Anyway, sorry for the length of this, and, again, thanks to all who
post.

-- Mike L. (Colorado)




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