Support

When I was learning about Huntington disease there were only a couple of places where you could go to find personal support. The first was the Massachusetts General Hospital chatroom and the other was a LISTSERV called HUNT-DIS. The MGH chatroom has since closed down but HUNT-DIS is still alive and kicking.

Since then several other types of support have popped up and we are happy to share them with you here.  Each cyber-group has its own unique personality and I would recommend trying them all so that you can find the 2 or 3 that best fit your needs.  You may even find that your need changes as your HD journey progresses.  Even the personality of the groups will change over time as new members join and others move on.

There also used to be no international support but now the changes are very good that you can find an HD group in your own native language.

The following four are the ones that I pay the most attention to.  I'm an admin for the HDLF Forum and HUNT-DIS.  HDCaregivers is administrated by Carmen Leal.  The Huntington's Disease Support Club is a regularly scheduled interactive chat hosted by Sue Wright of England.

HDLF Forum - This is a message board that we provide for our site visitors. We offer this to you as a way to build an extended support network of others who have personal experience facing HD issues. It is a very active so you will nearly always get a response of some type. It's a great group of participants who understand the HD experience. It is a public forum so if you want to keep a low profile you can register under an alias.  As part of our adocacy effort we invite none HD family members to join and participate so that they can learn from us.  We even have HD researchers who monitor our site and help us out when the issue is research related.

HUNT-DIS - This LISTSERV is one of the original sources of support for families affected by Huntington disease.  It's not as active as it once was but it still has around 250 members who are active in the HD community.  A list-serv is essentially subscribing to an email group.  You can send your questions or comments via email to a group email address and everyone who is a member of the group receives the email.  Then they can chose to respond back.  Their response goes back to the group email address and is distributed to both you and everyone else who is a member of the group.

HDCaregivers - HDCaregivers is an awesome Yahoo group for those who are providing care for HD+ family members.  It was formed as a spin-off from HUNT-DIS when members who were caregivers were unable to get the support they needed because of their concern of hurting the feelings of those that are HD+.  It's not unlike some support groups that have separate rooms for caregivers and those for HD patients.  So HDCaregivers is limited only to caregivers so that they can be honest with their comments.   It's a very active group and I highly recommend that you join so that you can at least read about the problems of others and the solutions that are offered. It is similar in experience to a LISTSERV because your interaction with the group is normally via email.

Huntington's Disease Support Club - For those who prefer immediate feedback ... and sometimes we all need that close interaction ... Sue offers the HDSC site.  Pop in and introduce yourself.  Tell her Steve Ireland sent you (or maybe you better not).

 

The following is a list of other HD groups that I'm a member of or at least know about (many of which I still passively monitor) but they are generally less active unless their primary mission is advocacy or fund-raising (as opposed to providing support).

Here are a few Facebook groups.  I don't seem to get along with Facebook well.  I like to have a little more control over the information flow than I get with  Facebook.

  • HD Care Givers (Facebook)
  • HD (Facebook)
  • HD Network (Facebook)
  • Live for Life (Facebook/Scotland)
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