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By Phil Hardt HDSA's 2000 HD Person of the Year and HD pioneer for family
services & education: Many who are at-risk ask me to recommend how to prepare for the 50% chance that they will
become symptomatic with HD. My simple answer is, prepare like you are going to get it and live like you will not. Includes
2006 update for printing. |
Huntington's Disease information from the National
Institute of Neurological Disorders and Stroke National Institutes of Health
Brochure~Testing
for HD-Making an Informed Choice - Excellent brochure
and handout covering trans-mission of HD, the DNA test and what the CAG numbers mean, uncertain/reduced penetrance, the process
of the genetic testing, questions to consinder on whether or not to be tested, insurance, assesing your coping strategies,
impact of test and more.
14 Changes That
Could Signal Concern - By Phil Hardt -
To inform and teach about the softer symptoms of HD in a manner that can be easily understood, allowing everyone to recognize
their subtleties early on so they can cope positively with them, instead of letting them ruin their lives.
-A Darmouth College Biology paper dealing with
ethical, legal, and social issues involved with genetic testing for Huntington's Disease
Guidelines for
Presymptomatic Huntington's Disease DNA Diagnosis - Katie P. Leonard, MS - Presymptomatic testing is available to individuals who are at risk of having
inherited the gene for HD and who are at least 18 years of age. Minors (17 and under) will not be tested unless there is a
medical reason to do so i.e. an at-risk child is showing symptoms. Exceptions to this requirement will be formally reviewed
by the team members and advisory committee.
Huntington's Disease information from the National Institute
of Neurological Disorders and Stroke National Institutes of Health
A short article written by Laura Bruni describing the motor,
personality and cognitive symptoms of Huntington's Disease.
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Huntington's Disease information from the National Institute of Neurological
Disorders and Stroke National Institutes of Health |
Huntington's Disease information from the National Institute
of Neurological Disorders and Stroke National Institutes of Health
Huntington's Disease information from the National Institute
of Neurological Disorders and Stroke National Institutes of Health
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Portraits
of Hope-Stem Cell Research - A project to put a "human face" on the need for stem cell research.
You can submit your own short essay and picture to be included in their database.
This fact sheet explains: how Huntington's disease is passed on the likelihood
of developing the disease. In PDF Format.
Retest effects and cognitive
decline in early HD. -Many attention and executive tasks adequately assess the progression of the disease
at an early stage. For other functions, the overlapping of retest effects and disease progression may confuse the results.
Past experience shows us that genetic testing in Huntington's disease can have
a profound emotional impact on the individual and that individuals must be aware
of the possible adverse consequences before testing.
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Since the discovery of the gene for HD in 1993, this question has loomed
before thousands of people who are themselves at risk, or have friends or relatives at risk for Huntington's Disease.
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From the Guidelines For Predictive Testing In Huntington's Disease you should know
you rights, what to expect, what to ask for in both pre and post testing, for counseling, privacy and more.
Huntington's Disease information from the National Institute of Neurological
Disorders and Stroke National Institutes of Health
What Is Predictive Testing
in HD- Excellent summary from the HD CoE at University of Virginia coverining
inheritance, what you can expect on the predictive testing, genetic counseling, the neurological exam, the psychological
screening, insurance and cost concerns, long term care insurance, personal issues to be considered , the timing of the testing
process, alternatives to testing, and a sample consent form.
Clinical Research Studies
In Huntington's Disease
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