Juvenile Huntington’s - getting emotional support

Because Juvenile Huntington’s is such a rare condition, living with it can feel quite isolating. At times, it can also be difficult to cope with all the changes it brings about. Many children and young people with Huntington’s and their families get a tremendous boost from interacting with others affected by the disease.

There are various ways you can get support and connect with other people in a similar situation to you:

  • You can contact the Huntington’s Disease Association’s specialist adviser on Juvenile Huntington’s, Helen Santini. You can reach her on helen.santini@hda.org.uk or 01279 507656.
  • Your local Specialist Huntington’s Disease Adviser (SHDA) can also provide help and support and put you in touch with other people and organisations that can help you.
  • We run an annual weekend away for children and young people with Juvenile Huntington’s and their families. There is no charge to attend and it’s a great way of meeting new people, sharing experiences, making friends and having fun.
    Contact us for more information.
  • We also have local branches and support groups that enable people affected by Huntington’s and Juvenile Huntington’s to support each other.
  • The Huntington’s Disease Youth Organization (HDYO) is an international organisation with a great website with lots of information and ways to connect with other young people affected by Huntington’s or Juvenile Huntington’s. There is a page for siblings of children and young people with Juvenile Huntington’s.
  • The HDA message board is an online space moderated by us for people who would like to share thoughts, get and give advice and chat with other people who are living with Huntington’s.

If you have any questions about how to get emotional support for yourself or a member of your family, please contact us.