Living with Hope While At Risk for HD

Our understanding of HD is steadily increasing:
  • This well written article "2011 - a year in Huntington's disease research" at HD Buzz shares the past year's highlights.
  • The HD community is learning but continues to need more information about the earliest indications of the onset of HD symptoms. This information is critical for the development of therapeutic trials aimed at postponing clinical onset in HD gene carriers. If you want to understand this or want to know how to get involved, contact our HD Care Consultant, Joanne, at 215-219-3521 or joannehdcare@phillycurehd.org.
There is much you can do to take care of yourself: Remember you are not alone: You should know that there is a genetic testing for HD:
  • The genetic test is a simple blood test that will tell you if you have the Huntington's disease gene.
  • Getting a positive result for HD only tells you that you have the gene for Huntington's disease. It does not tell you if you have symptoms or when you will become symptomatic.
  • There are a host of things to consider before anyone should get tested. Please read "Genetic Testing for Huntington's Disease".
  • If you are considering getting tested you will want to talk with an HD knowledgeable genetic counselor. Here is a link to a Listing of genetic testing centers.
For more information contact Philly Cure HD's Care Coordinator, Joanne at 215-219-3521 or joannehdcare@phillycurehd.org.

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