Because Huntington’s is a rare condition, living with it can feel quite isolating at times. It can also be difficult to cope with all the changes it brings about. You may also find you experience feelings of frustration or despondency, or you may feel guilty because of the impact your illness has on those around you - even if, rationally, you know it’s not your fault.
Many people with Huntington’s and their families get a tremendous boost from interacting with others affected by the disease. It can feel very reassuring, and help you cope with the tougher challenges.
There are various ways you can get support and connect with other people in a similar situation to you:
See also our information on emotional support for carers.
Living with Huntington’s disease can be very difficult, for you if you have it and for your family. 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.