Helpful Tips for Family & Friends

Know that you are not alone
  • A part of Philly Cure HD's Mission Statement is to foster a strong HD community. We hope you will get involved with our organization and through us build your support community. You can 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.
  • You will find that HD changes many relationships. In Marsha Miller's insightful article called "Family & Friends" she writes "family and friends are the greatest source of support..."
Watch out for the health and well being of everyone in the family.
  • You need to acknowledge your feelings. Having a friend or family member at risk or with the HD gene will bring about many different emotions such as anger, sadness, fear, confusion, helplessness. If you can't get beyond some of these emotions and they are negatively impacting your life, then you will want to seek some help, perhaps from a counselor.
  • Family and friends should lovingly and respectfully encourage each other to pay attention to their own physical and mental health.
Be aware that support needs for individuals with Huntington's disease are varied and change over time:
  • No two people's Huntington's disease symptoms are going to be alike.
  • Likewise the support that different people need for their Huntington's disease is going to be different. If you are stuck and don't know how to help someone, you should ask around. There are a numerous resources available, many individuals who have a wealth of experience that they can share, and many different ways to support someone with HD.
  • You will want to find new ways to be close.
    • Over the course of time HD symptoms and challenges will change and take away things and activities that were important and that kept relationships close.
    • It is important that families and friends look for new ways of maintaining those bonds. For example, you may no longer play soft ball together but you can certainly watch a game together.
It is important that you ask for help when you need it.
  • We all have strengths as well as weaknesses, so find help when you are challenged by your friend's or family member's HD.
  • Our website has many helpful resources and our HD Care Coordinator, Joanne, can help with many more.
For more information contact Philly Cure HD's Care Coordinator, Joanne at 215-219-3521 or joannehdcare@phillycurehd.org.

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