Huntington's Disease Support Group

A Huntington's disease support group can help people with the disease by providing them with a place to discuss and share information and experiences related to the disease and its treatment. A good support group often includes people who have been recently diagnosed with Huntington's disease as well as people who have had the disease for longer periods of time; other signs of a good Huntington's disease support group include a leader who can help distill discussion into useful information and a history indicating that the group is stable.

 

Huntington's Disease Support Group: An Introduction

Huntington's disease patients may find it therapeutic to meet with other people who have this illness. Often this can be accomplished by joining a local Huntington's disease support group. Review the following information carefully before you search for a support group that is reliable, convenient, and comfortable to you.
 

Selecting a Huntington's Disease Support Group

Huntington's disease support groups are not appropriate for everyone, and some patients may find that a support group actually adds to their stress rather than relieving it. Most Huntington's disease support groups are free, collect voluntary donations, or charge modest membership dues to cover basic expenses (e.g., refreshments at meetings or photocopying costs).
 
A useful Huntington's disease support group should include:
 
  • Both newcomers and people who have had Huntington's disease for longer periods of time to provide a balance of perspectives for the group
     
  • People with whom you feel comfortable
     
  • Leaders who empathize, gently draw out shy members, and keep others from dominating, and who distill discussion into useful information
     
  • A history indicating the group is stable and meeting the needs of its members.
     

Things to Be Wary of in a Huntington's Disease Support Group

Some Huntington's disease support groups may put their own interests before yours. Avoid support groups that:
 
  • Promise a sure Huntington's disease cure and quick solutions
  • Conduct meetings that are mainly "gripe" sessions
  • Urge you to stop prescribed treatment for Huntington's disease and recommend a single solution to your problem
  • Insist that you reveal private or sensitive information
  • Demand allegiance to a cult-like, charismatic leader
  • Charge high fees
  • Require you to purchase products.
     
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Written by/reviewed by: Arthur Schoenstadt, MD
Last reviewed by: Arthur Schoenstadt, MD