It can be difficult to talk to people about Juvenile Huntington’s disease. On the one hand, it’s such a rare condition that most people haven’t heard of it and won’t know the symptoms or understand what it means for the future. And on the other, many people find it particularly difficult to talk about serious or life-limiting illness when it affects a child.
It’s helpful to have people you can have honest conversations with, so you can share your worries and talk openly about what you are dealing with.
The Huntington’s Disease Youth Organization (HDYO) provides support for children and young people around the world who have Huntington’s in their family. Its website includes a section on Talking about JHD with children and young people.
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.