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Thank you for
taking a look at this page. May of you
already know, and some have no clue about
how Huntington's Disease affects my life.
During my birth, my mother displayed some
abnormal movements. Five years later it was
determined to be Huntington's Chorea. My mom
was not aware she was at risk for this
disease because she had been adopted. While
growing up, my dad and I took care of her
until eventually we could not safely leave
her side. At that point we made a decision
to put her in a nursing home. She is
currently living at Ingleside Nursing Home
in Mt. Horeb, where they take wonderful care
of her. We visit her every week, and take
her out as much as possible.
I have a 50% chance of also getting
Huntington's Disease. This is a scary thing,
but I have known about this for most of my
life. There is a test available, but I
haven't had the guts to take it yet. I'm
sure I will before I start a family though.
I am very open about all of this, so if
anybody has any questions about the disease,
or the personal factors of it, feel free to
contact me. I really do want more people to
have knowledge |
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about it, since
it is such a rare disease.
The Milwaukee Journal Sentinel did a
wonderful article on Huntington's Disease
and my family. Please
click here to take a
look.
Huntington's
Disease (HD) is a devastating, degenerative
brain disorder for which there is, at
present, no effective treatment or cure. HD
slowly diminishes the affected individual’s
ability to walk, think, talk and reason.
Eventually, the person with HD becomes
totally dependent upon others for his or her
care. Huntington’s Disease profoundly
affects the lives of entire families:
emotionally, socially and economically.
Named for Dr. George Huntington, who first
described this hereditary disorder in 1872,
HD is now recognized as one of the more
common genetic disorders. More than a
quarter of a million Americans have HD or
are “at risk” of inheriting the disease from
an affected parent. HD affects as many
people as Hemophilia, Cystic Fibrosis or
muscular dystrophy.
Early symptoms of Huntington’s Disease may
affect cognitive ability or mobility and
include depression, mood swings,
forgetfulness, clumsiness, involuntary
twitching and lack of coordination. As the
disease progresses, concentration and
short-term memory diminish and involuntary
movements of the head, trunk and limbs
increase. Walking, speaking and swallowing
abilities deteriorate. Eventually the person
is unable to care for him or herself. Death
follows from complications such as choking,
infection or heart failure.
HD typically begins in mid-life, between the
ages of 30 and 45, though onset may occur as
early as the age of 2. Children who develop
the juvenile form of the disease rarely live
to adulthood. HD affects males and females
equally and crosses all ethnic and racial
boundaries. Each child of a person with HD
has a 50-50 chance of inheriting the fatal
gene. Everyone who carries the gene will
develop the disease. In 1993, the HD gene
was isolated and a direct genetic test
developed which can accurately determine
whether a person carries the HD gene. The
test cannot predict when symptoms will
begin. However, in the absence of a cure,
some individuals “at risk” elect not to take
the test.
Since the discovery of the gene that causes
HD, scientific research has accelerated and
much has been added to our understanding of
Huntington’s Disease and its effects upon
different individuals. By continuing to
increase our investment in both clinical and
basic HD research each year, breakthroughs
in treatment – and a cure – will be
forthcoming.
 
My mom has
suffered from this disease for 19 years now.
I never really knew her real
personality...but from what I have heard,
she was wonderful. A straight A student,
shy, and nice to everybody. Other people
would always come before herself. She would
never forget a birthday, and would never
forget to let someone know how much they are
loved. I love my mom very much, and I would
give anything to have grown up with her not
being sick. Now I just pray that she is
still enjoying life, and I also pray for a
cure.
Over the past
several years I have become very active in
Huntington's Disease awareness. At this
year's National Convention I was a speaker
and facilitator of a few sessions.
I have also been
a leader of the Huntington's Disease Society
of America's National Youth Alliance. For
more information on the NYA please go to:
http://endoflifecare.tripod.com/livingwithhd/id1.html
I am also a
board member on Wisconsin Chapter of the
Huntington's Disease Society of America.
Please visit our website!
http://www.hdsawi.org |
