Help for young adults

If you’re affected by Huntington’s as a young adult (from 18 years until approx. 35 years of age) - perhaps because someone you know and love has it, or because you are at risk or have the gene yourself - you will face particular challenges that most people your age don’t have to face. There are ways of managing stress, and there might be times when you need help. There are also a number of resources to help you cope with any difficulties you face.

 

Talking to others

 

It can be difficult, but it is 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.

If you are 25 years or under the Huntington’s Disease Association’s dedicated youth worker is great to talk to about anything that’s worrying you or any questions you have. Our youth worker runs the Huntington’s Disease Association’s Youth Engagement Service (HDYES).

If you are 26 years or over our Specialist Huntington’s Disease Advisers are there to support you. They 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.

You can also read some of our blogs created by young adults.

 

Events

 

We run online events for young adults. Previous sessions can be viewed on our YouTube channel and include:

  • Genetic testing
  • Research
  • Psychological support
  • Pre-Implantation Genetic Diagnosis (PGD-IVF)

To see any upcoming sessions, please visit our events page.

 

Huntington’s Disease Youth Organization

 

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 young people who are themselves affected by the disease in some way. HDYO has a closed Facebook group. The group is available to young people (up to 35 years of age) impacted by Huntington’s disease around the world and is a place for sharing, receiving support and meeting other young people. The group is a closed one, meaning if you join none of your friends on Facebook will see it or know. The group is open to young people impacted by Huntington’s in some way (at risk, tested positive or negative, not at risk but in a family with Huntington's disease etc.) and partners of young people are also welcome as long as you are under 35 years. The group is not open to parents or family members of young people impacted by Huntington’s, unless they are young people (under 35 years) too. The group is moderated by the Huntington's Disease Youth Organization (HDYO). If you would like to join the group please click here.

HDYO also has a space where you can anonymously ask a question which will be answered by their panel of experts. Click here to find out more.

 

Resources

 

We have created a guide for young adults affected by Huntington’s. You can download it here.

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 Specialist Huntington’s Disease Adviser 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 disease

 

At 18 years of age, 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 disease.

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 please contact us on 0151 331 5444 or [email protected] if you can't find what you need.

 

Social Media 

 

We share a lot of information and stories through social media, so this is a great way to keep in touch 

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