Learning to Live Well with HD

Speak to and learn from others:
  • Connect with others in the Huntington's disease Community. There is something for everybody. Try one or more from this sample listing or contact Joanne, our Philly Cure HD's Care Consultant, at 215-219-3521 or joannehdcare@phillycurehd.org to discuss what might be best for you.
    • There are monthly Support Groups for anyone in the HD community. Call 540-247-4536 for information.
    • At the Huntington's Disease Support Center Forum you can read or take part in discussions on any issue related to Huntington's disease.
    • There is an Huntington's disease Caregivers Gathering every other month on the 1st Tuesday of the month in Conshohocken, PA. Contact Joanne, 215-219-3521, for our next gathering.
  • Attend an HD Event.
    • By clicking here you can learn about Philly Cure HD's Upcoming Events.
    • Get regular communication about Huntington's Disease. Email info@phillycurehd.org to request to be added to Philly Cure HD's electronic mailing list and you will receive updates about our events as well as about local, national, and international HD news.
Read up about HD from reliable resources. Take care of your health.
  • Find knowledgeable professionals preferably long before you are in need of them. This includes; a primary care physician, neurologist, dentist, dietician, social worker, OT, PT, and Speech Therapist. You may want to see that each of these professionals has the free publication "A Physician's Guide to the Management of Huntington's Disease".
  • Try to eat well, find exercise that you enjoy, develop good sleep habits, and make your life environmentally enriched, whatever that might be for you.
  • Consider getting involved in a HD research trial. You can read about many at the Huntington's Study Group.
  • Learn what is the current thinking and the best practices for use of medications and supplements. One resource for this information is "Huntington's Disease Drug Works – Treatment Overview".
For more information contact Philly Cure HD's Care Coordinator, Joanne at 215-219-3521 or joannehdcare@phillycurehd.org.

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