Help for children

If you’re in a family that has someone in it with Huntington’s (sometimes also called HD), you’re likely to have a lot of strong feelings about it and perhaps some questions or things going on that you don’t understand. So it’s very important that you have someone to talk to. If people know what’s going on for you, they can try and help you.

Sometimes it helps to talk to someone you know and trust, such as friends, family, a doctor or teachers. Sometimes you might want to talk to someone whose job it is to help children in situations like yours. And sometimes you might find that it helps to talk to other children like you, who are affected by Huntington’s.

  • The Huntington’s Disease Association’s dedicated youth workers are great to talk to about anything that’s worrying you or any questions you have about Huntington’s. They also run the HDA Youth Engagement Service (HDYES).
  • The Huntington’s Disease Youth Organization (HDYO) provides information and support for children and young people around the world who have Huntington’s in their family. It’s mainly run by children and young people who are themselves affected by it in some way.
  • Childline is a charity that children and young people can contact to talk about anything they are worried about. You can call them, use online chat or email them.
  • If you or your brother or sister has Juvenile Huntington’s, remember you can also contact our JHD specialist advisor Helen Santini, or ask someone caring for you to contact her. Helen will be happy to help you find what you’re looking for and answer any questions you have. You can reach her on [email protected] or 01279 507656. Also take a look at our information about getting help for Juvenile Huntington’s.

Growing up with Huntington’s in your life can be very difficult at times. You should never feel that you have to face things alone. You can always contact us for help and support.

You can now order our booklet for primary school aged children by emailing [email protected] or by calling 0151 331 5444.