New to Huntington's disease?

If you’ve recently found out about Huntington’s disease in your family, it’s likely you’re experiencing a range of very strong emotions.

You may have:

  • recently found out that Huntington’s affects your family.
  • had a recent diagnosis from a medical professional – this could be following a family history of the disease, or it may be that you never knew it was in the family.
  • had a positive test for Huntington’s from a geneticist, but you’re not showing any signs.
  • noticed that symptoms are starting having already known you carry the Huntington’s gene.
  • found out that someone you care about or their family is affected by Huntington’s disease.

Whatever way you’ve come to find out about Huntington’s, you may have many strong feelings. These could include anger, denial, sadness and fear. You could also be feeling confused or anxious and not sure what to do next.

It’s important to know there’s no right or wrong way to feel. Everyone will react differently to finding out about Huntington’s and that’s ok.

Where do I start?

You may have lots of questions but you’re not sure who to ask.

Our Specialist Huntington’s Disease Advisers can offer advice and information, and let you know about local services and support groups. If you haven’t already made contact with your local Specialist Huntington’s Disease Adviser we would advise you to do so.

What’s next?

This website is here to help you to understand Huntington’s disease and the kinds of support that may be available to you. But there is a huge amount of information on here, some of which might be upsetting.

Our advice is:

  • Take your time with the website.
  • Look for the pages that you think might be relevant to you and dip in and out.
  • Take a break if you start to feel overwhelmed.
  • Have someone with you to support you while you look through the site, if you feel you need it.

Our Specialist Huntington’s Disease Advisers are here to help you. They can talk through your personal situation and guide you through your next steps. They can also provide a listening ear if you just need to talk.

Find your local Specialist Huntington’s Disease Adviser