Living with HD

It can be hard when someone you love has HD. There can be lots of changes to cope with not just for them, but for you too. Because of the brain cells that are dying, people with HD can change a lot as they become more unwell. They may not be able to do things with you the way they used to. They may sometimes get angry with you and be rude to you. Try to remember that it is the illness that makes them do this. IT IS NOT YOUR FAULT – or theirs. They still love you but cannot show it as well because of the changes in their brain.

HD isn’t very common, so it is possible that other people might not understand the changes in the person with HD. You can explain it’s because they aren’t well or tell them what you know about HD if you think it would help.

It is very important that you have someone to talk to. You will need people you can trust to talk to about how you feel. If people you trust know what’s going on they can try and help you. This could be anyone you trust, friends, family, teachers are just some of the people you may choose from. Remember it is up to you who you tell.

The Hunthington’s Disease Association has a team of Regional Care Advisers who you can speak to about Huntington’s Disease. If you would like to speak to a Regional Care Adviser please call Head Office on 0151 331 5444 or email them on info@hda.org.uk