Speaking Out ~ Living With HD

Living with HD
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Living With HD
Taken from the Scottish Huntington's Association webpage who has one of the
best resources for young people living with HD.  Visit their special pages for
young children under 14 and their page for teenagers.
DownloadWORD: Living With HD

It can be hard when someone you love has HD.  There can be lots of changes to cope with.  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.

Other people might not understand the changes in the person with HD.  You can explain it's because they aren't well.  Maybe you could show them this website and help them understand HD better.

It is important for you to talk to people about how you feel.  People in your family, friends and teachers need to know what's going on so they can try and help you.  It's good to have someone to talk to!

Sometimes it can feel unfair that you have to deal with all this HD stuff when you just want to be like your friends.  It can be hard to cope with all the changes HD can bring.  You might feel:


It's okay to be angry sometimes.  Just try to let your anger out in a safe way - punch a pillow, scream at the top of your voice or throw a ball as hard as you can against a wall - whatever works for you, so long as you don't hurt yourself or anyone else.  It feels good to let it out.


If you are feeling blue, let someone know.  A big hug can make you feel better!  Crying also helps to let go of some of those sad feelings.  If no one else is around, teddy bears and pets can make good listeners and good huggers too!


All this informatin can be confusing.  If you have any questions, just ask!  Other people in your family might know the answer or can help you find out.  You can also ask questions on this website.  Just go to the ""Ask Sarah"   page and send your question to her.  Sarah Harvey is the youth information officer for the Scottish Huntington's Association.


People with HD can behave differently.  Other people might not understand why they do this.  Try and explain to your friends what HD is - show them this website!  It will help them to help you too if they understand more about it.  If things are difficult at school, maybe you could show this site to your teacher too.


Let someone know what's on your mind.  Worries feel bigger when they just sit in your head.  Let them out with someone you can trust.


None of this is your fault.  If you feel bad about something, find a special person you can talk to about it.