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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