Huntington's Disease Advocacy Center - Huntington's Disease Advocacy Center

To Live 'As If' - My Story, Part IV
A New Arrival Very At Risk
by T.C.
The birth of my grandson in August 1995 was less than a blessed event for me. While my daughter basked in the attention, my emotions were being tossed as though through a cement mixer.
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To Live ‘As If’ - My Story, Part III
Home is where the Heart Breaks
by TC
The minute we were home and unpacked from that July 1995 vacation, where I first realized that my sister almost certainly had Huntington’s Disease, I hit the phones.
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Insights into Huntington's
by Kelly B.
After years of wondering just what my "problem" was, I do admit that I am relieved that my problem finally has a name. I have always been very different from others and had a really hard time fitting in with those people around me. And I knew many years ago that there was something wrong with me because of my very odd feelings and behaviors. My "quirks" if you will.
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Coping with Loss as a Caregiver
by Marsha L. Miller
Taking care of a loved one with Huntington’s Disease is never easy no matter whether it is a parent, a spouse, a child, or a friend. All along the journey there are triumphs and grace periods and lots of love, but there are also losses to be grieved.
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HD and Aquatics for Movement Disorders
by Patricia Ann Morgan Candlish BA MLS
I have been too busy to have HD. Unfortunately I got it anyway. When I realized that I would have HD like my mother I decided that I would do things differently to improve my quality of life.
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The Secretary’s Advisory Committee on Genetics, Health, and Society Hearing on Genetic Discrimination
by Phil Hardt

Please take the time to complete and return via e-mail or fax any examples of genetic discrimination you have experienced to Amanda at the NIH ASAP! There is an important meeting on October 18th where they will use these. Your help is greatly appreciated. I have posted [Amanda's] note to me below.
Thanks......Phil
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Mom, I have Huntington Disease; I am sure.
by Maggie
I knew, even without the test, that my husband, Tony, had Huntington’s Disease. But for whatever reason I never considered the possibility that our sons, Jason and Eric, could have the disease even though I knew they were at the typical age of onset.
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Living in the Gray Area
by Paula
When I was in my twenties, I saw Alice's restaurant and wondered about the Huntington's chorea that Woody had. I never thought more about Huntington's disease until my brother was in his mid-thirties.
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To Live ‘As If’ - My Story, Part II
Head on Collision with the Truth
by T.C.
In July 1995, we went on a family vacation, renting our favorite lakefront home in a resort community just outside Yosemite National Park. Always, the cast for our family trips included many ‘extras’, friends of our children, our own friends and, of course extended family. Guests on this vacation included a family friend, my young nephew, his mother/my older sister, and Huntington’s Disease.
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Life After Testing
by Kelly B.
It is a toss up to say which is worse, growing up knowing you could inherit the disease that has ravaged family members all around you. Or finding out right out of the blue and getting the shock of your life, like I did.
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