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Huntington’s Disease Awareness Month
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.
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.
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