My brother Sean has been showing symptoms of Huntington's Disease for about 5 years now; my young niece Stephanie resides in a brain trauma center for HD residents. My father Bernie & my sister Dana passed from HD. It just goes on + on because Huntington's Disease has NO CURE or TREATMENTS. An HD victim develops the symptoms over a FEW years but lies in bed for MANY, MANY more years. The disease wreaks havoc on all family & friends of the person with HD. It is a genetic disease that gives each offspring of an HD victim a 50% chance of developing the disease. PLEASE donate & support the RESEARCH on this horrific disease!
We found HDSA on the internet after my husband was diagnosed at age 55. HDSA provides resources for all aspects of the terrible disease of Huntington's. They desperately try to promote funds to make all aware of the need for research and a possible cure. I hope all of my fellow HDSA friends add to this site, and thank you for helping to bring awarenss to HDSA.
This disease,because it is hereditary and so totally disabiling,changes family dynamics forever. For example: My wife and I had only one child (I wanted another) but my wife did not want to bring into the world the possibility of two children with HD. Our son,who is currently 33,wonders if he should get married at all;to save possible future family members from what he sees his mother and father going through. If he does get married should they have children? If so how to have them and not have to worry if they will inherit HD. These are some of the long range questions one must ask considering the 24/7 total care that must be given the HD spouse. HDSA for me personally,provides support groups for HD patients and caregivers,who are invaluable friends who truly understand what each other is going through. In the support groups one thing we all have in common is HOPE. Hope for more advocacy,Hope for a treatment,and ultimately HOPE for a cure. That is what HDSA provides. HOPE.
I am 1 of 13 children, 8 of which have tested positive for Huntington's Disease (HD), 2 negatives, and 3 who have not tested. This terrible disease claimed the life of my father and is slowing taking the life of 2 of my sisters. Both sisters are in and out of nursing homes and are unable to care for themselves. Other siblings are at various stages of disease progression, including myself. I was forced to end my career short and now disabled. This disease is horrific as it robs it's victims of not only physical abilities, but it robs them of the essence of who they are; their personality. HDSA has been a beacon of hope for myself and many, many others who continually suffer from this disease. Below is a brief description of HD and the mission of HDSA. Huntington's Disease: a devastating, hereditary, degenerative brain disorder for which there is, at present, no cure and only one FDA-approved treatment (Xenazine) for a symptom of HD.. 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. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.
HDSA Mission: The Society is a National, voluntary health organization dedicated to improving the lives of people with Huntington's Disease and their families.
To promote and support research and medical efforts to eradicate Huntington's Disease.
To assist people and families affected by Huntington's Disease to cope with the problems presented by the disease.
To educate the public and health professionals about Huntington's disease.