Caring for someone with Huntington’s can be very difficult. Even more so if you are a young person having to shoulder a lot of adult worries and responsibilities in addition to the normal challenges of growing up and making your way in the world. It can feel very lonely at times, so it may help to remember that you’re not alone; there are around 700,000 young carers looking after people in all kinds of situations in the UK, and there are organisations like HDA to help you. It’s important that you get as much support as you can.
- It can be difficult to talk to people about Huntington’s. It’s a rare disease so most people haven’t heard of it and won’t know the symptoms or understand what it means for the future, so you might be the person explaining it for the first time. But it’s important that you do find ways to share what you are dealing with, to those you are close to. See our talking to others pages for help with this.
- www.youngcarer.com is an online support service for people under 18 in the UK who look after someone in their family who has an illness, disability or mental health condition.
- Most carers charities and services also offer help to young carers. Carers UK offers information, advice and support via its advice line, tel: 0808 808 7777. Carers Trust supports young carers to cope with their caring role through specialised services across the UK. You can find your local branch here.
- There are a number of sources of support for children and young people affected by Huntington’s that can also help young Huntington’s carers. For example, our Youth Engagement Service can connect you with young carers projects that can help you. Take a look at our Help for children, Help for teenagers or Help for young adults sections for more information. Our Specialist Huntington’s Disease Advisers (SHDAs) can also give help and advice.
- 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.
- You can also find more information about getting help with different aspects of caring for someone with Huntington’s in our Carers section.
- Being a young carer of someone with Huntington’s can feel quite lonely and isolating. Connecting with other people in a similar situation to you can be a big support. Our Help for teenagers section also has information about how to make contact with other young people affected by Huntington’s, including young carers.
- You may also be at risk of developing Huntington’s yourself if the person you are caring for is your parent, and this can add another layer of stress and worry to your situation. If so, you may find it useful to look at our sections on being At risk of developing the disease, and Help for teenagers/Finding out if you have Huntington’s.
If you find it difficult to get the information or support you need, please contact us - we’re here to help you.