For children and young people

If you are a child or young person that has someone with Huntington’s in your family, this section is for you.

Growing up with Huntington’s in your life can be very upsetting and frustrating. What you are going through is not something that many people your age have had to deal with. However, it is worth remembering that there are other young people in a similar situation and you are not alone.

  • Getting to know people who are also affected by Huntington’s, and perhaps those who face other but equally difficult challenges, can help you feel stronger.
  • It is also important to give yourself a break from Huntington’s - to have friends who are not affected, and to take part in activities where you forget all about it.
  • Taking time out to enjoy everyday things you enjoy, for example gaming, music, football or dancing, can help a lot.
  • Trying out new hobbies and giving yourself challenges will help give you confidence and remind you of what life has to offer.

The Huntington’s Disease Association is now reaching out to young people affected by Huntington’s - for example through conferences and our Youth Engagement Service.

We also have a specialist youth worker who would be happy to help you, and you can also contact your local Specialist Huntington’s Disease Adviser (SHDA). The Huntington’s Disease Youth Organisation (HDYO) also has a great website with lots of information and advice.

If you have Juvenile Huntington’s, remember you can also contact our JHD specialist adviser 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 helen.santini@hda.org.uk or 01279 507656. Also take a look at our information about getting help for Juvenile Huntington’s.

More information and ideas follow. If you don’t find what you are looking for, please contact us. We’re here to help.

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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.

Help for teenagers

If you’re affected by Huntington’s - perhaps because someone you know and love has it, or you may be at risk yourself - you’re likely to have a lot of strong feelings about it and perhaps some questions that you don’t like to ask.

Help for young adults

If you’re affected by Huntington’s as a young adult (18-35 years old) - perhaps because someone you know and love has it, or you may have it or be at risk yourself - you will face particular challenges that most people your age don’t have to face.

Help for young carers

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.

Our youth engagement service

Our Youth Engagement Service (HDYES) works with young people whose families are affected by Huntington’s. This confidential service is for anyone aged 11-22 living in a family affected by the disease (including extended family such as a cousin, grandparent, etc.).

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About HDYO

The Huntington's Disease Youth Organsiation (HDYO) is an international non-profit organisation specifically for children and young people around the world who are affected by Huntington's disease. 
You can find useful information about Huntington's disease for kids, teens, young adults and parents, including blogs, videos and research that's easy to read. 

Find out more here.