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 Adviser for North Wales is Alwena Potter and she can offer advice and information, and let you know about local services and support groups. Please make contact with her if you haven’t already done so.