Talking to others about Huntington's can be daunting at first. Here are some tips to help make things a little easier.
Our Youth Engagement Service - HDYES have put together a list of handy tips if you are thinking about talking to people about Huntington's disease but don't know where to start. Some of these tips also apply if you are thinking about talking to your children about Huntington's.
- If you don't want to directly speak about it, you can use our teenager guide or teacher guide to share with people instead
- Use simple language so others can understand
- Having prepared answers or responses is useful if people ask you question
- Share the rarity statistics so that others get an understanding as to why they haven’t heard of it (around 8000 in the UK have Huntington's)
- Signpost to our website, social media or YouTube channel if they want to know more
- Link to short videos or clips
- You can use illustrations, drawings or images to explain
- Only share and talk about what you’re comfortable with the person knowing
- Don’t expect people to fully understand what you’re sharing - refer to guides or our website
- Use metaphors or analogies to compare
If you need extra help talking to your friends, teachers or children about Huntington's disease, please get in touch with our Youth Engagement Service - HDYES and we can support you in doing this.
Download our guides
It can be very difficult and upsetting as a young person in a Huntington’s family. What you are going through is not something that many people that age have to deal with. Here you can find more information on support including a link to our Youth Engagement Service. The teachers guide is a great resource to share with schools to help them better understand what Huntington’s disease is and what you will be going through.
If you have a story to share, please get in touch with us via email.
