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. There are some good and some not so good ways of managing stress, and there might be times that you need help. There are also a number of resources to help you cope with any difficulties you face.
- It can be difficult - but important - to talk to people about Huntington’s. Most people in everyday life haven’t heard of it and won’t know the symptoms or understand what it means for the future. See our section on talking to others for help.
- The Huntington’s Disease Association’s 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. Our youth worker also runs the HDA Youth Engagement Service (HDYES). This service is only available for people up to 22 years old.
- The HDA annual youth conference is an opportunity to meet other 18-35 year olds who are affected by Huntington’s. Please contact us to register your interest in attending the next conference.
- Your local Specialist Huntington’s Disease Adviser (SHDA) can give support and advice and help answer any questions you have about any aspect of life with Huntington’s. They can also connect you with useful groups and services; provide information about Huntington’s to healthcare professionals, the DWP, employers and other individuals and organisations you need to interact with; help you navigate complex systems and processes such as benefits applications to ensure you get what you’re entitled to; and advocate for you if you need someone to help you deal with different institutions such as your local council or benefits agency.
- The Huntington’s Disease Youth Organization (HDYO) provides support for young people and children 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, but its website contains a lot of useful information for people of any age.
- We produce a factsheet for young adults affected by Huntington’s. You can download it here.
- We have local branches and support groups throughout England and Wales that enable people affected by Huntington’s to support each other.
- We host an online community on HealthUnlocked for people who would like to share thoughts, get and give advice and chat with other people who are living with Huntington’s.
- Throughout England and Wales there are specialist clinics for people with Huntington’s where you can find healthcare professionals with particular experience and understanding of the disease. Some clinics also see people who have the Huntington’s gene, but are not experiencing any symptoms. Some also run research clinics which you may be able to get involved in even if you don’t have symptoms. Clinics are run in different ways and you can speak to your local SHDA about the options which are available in your area. You normally need to be referred to a specialist clinic by your GP.
- If you are concerned about issues relating to relationships and having children, see our Starting a family section.
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.
Living with Huntington’s disease can be very difficult, if you have it yourself or are at risk of having it, or if you love someone who has or is at risk of having it. The right support can make a big difference and we’re here to help, so contact us if you don’t find what you need.