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. So it’s very important that you have someone to talk to. Even without Huntington’s in your life, it’s not always easy being a teenager. There are some good and some not so good ways that people of all ages deal with stress, and it may be that you will sometimes need help. 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 or teachers. Sometimes you might want to talk to someone whose job it is to help young people in situations like yours. And sometimes you might find that it helps to talk to other teenagers like you, who are affected by Huntington’s.

  • Our dedicated youth worker is a very good person to talk to about anything that’s worrying you or any questions you have about Huntington’s. Contact the HDA Youth Engagement Service (HDYES) for more info.
  • The Huntington’s Disease Youth Organization (HDYO) provides information, advice 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 the disease 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 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.

There are also some publications that you might find useful:

  • The Huntington’s Disease Association produces a factsheet for teenagers.
  • For younger teens, we have a booklet available via our shop, priced at £13.50: Huntington’s Disease and Me – A Guide for Young People.

Finding out if you have Huntington’s

At 18, people who have a parent with Huntington’s and are therefore at-risk of developing the disease themselves, have the opportunity to have a predictive test to see if they will develop the disease in the future.

  • Deciding whether to take the predictive test is a really big decision. Once you know the result, you can’t ‘un-know’ it again, and it can have quite far-reaching implications.
  • Genetic counsellors are available to guide you through the decision-making process. You can ask your GP to refer you to a genetic counsellor who knows about Huntington’s.
  • Take a look at our section on Genetic testing to find out more about the predictive test.

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.