Huntington's
Disease (HD) is a devastating, hereditary, degenerative brain disorder for
which there is no cure, and only one FDA-approved treatment (Xenazine) for
symptoms. HD slowly diminishes the affected individual's ability to walk, talk
and reason. Eventually, the person with HD becomes totally dependent upon
others for his or her care. HD profoundly affects the lives of entire families
– emotionally, socially and economically.
The Huntington’s
Disease Society of America (HDSA) provides vital support, information and
educational services to improve the lives of those affected by HD. They also
offer resources and guidance for HD families through a national network of volunteer-based
chapters and affiliates, as well as through the HDSA Centers of Excellence for
Family Services, and promote and support research to find a cure for HD.
Community Health Charities is honored to partner with HDSA to help bring
awareness to this heartbreaking disease.
At this
time, there is no way to stop or reverse the course of HD. There is no treatment
to halt the progression, which leads to death after 10-25 years. However, now
that the HD gene has been located, investigators are continuing to study the HD
gene with an eye toward understanding how it causes the disease in the human
body.
HD is a disease of families. Though everyone is
born with the HD gene, the disease is caused by an abnormal copy of the gene
that is passed from parent to child. It is not contagious in any way. Only a
person who is born with the abnormal gene can ever get the illness or pass it
on to their children. Every person who carries the abnormal copy of the gene
will eventually develop symptoms, if they live long enough.
Although symptoms of HD vary from person
to person, even within the same family, the progression of the disease can be
roughly divided into three stages.
Caregivers
HD is a
disease that affects entire families, not just the person who has it. This is
particularly true of the person(s) who become caregivers. You become
responsible for helping your loved one handle everything that he or she previously
did themselves..
Finding Care in a Long-Term Care Facility:
For many
caregivers of people with HD, there comes a point where caring for your loved
one at home is no longer possible. This can be due to many reasons,
including being unable to dedicate the time to care or coordinate care for your
loved one, being unable to manage the complex needs of caring for your loved
one or simply being burnt out from the caregiving process. At this point, many
people start looking into the option of placing their loved one in a long-term
care facility.
