Speaking Out ~ Living With HD

What is HD?
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What Is 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.
Tell me what Huntington's Disease is.

Huntington's Disease is an illness that affects the brain and stops it sending messages to the body properly.  This means that our body and thoughts cannot work as well as they used to.  People get HD when they're older most people start to become unwell between the ages of 30 and 50.

When someone has HD they may change and behave differently.  They may not be able to walk and talk as well as before, and they may be more forgetful.  Sometimes they may be more bad-tempered and get
cross about little things. These changes take a long time and you might not notice them at first.

This is because of the way HD is changing their brain.  Our brain is very special and does lots of complicated things it helps us to think, walk, play computer games, run, remember the way to school everything we do in fact!  The brain is made up of millions of brain cells.

When someone has HD, some of these brain cells become sick and start to die.  This stops some of the important information that's whizzing around the brain from getting to where its supposed to go.  Imagine a relay race each runner passes the baton on to the next runner, who then does their lap.  They pass the baton on to the next runner until they
reach the finish line. If someone drops the baton, that team don't finish the race. In the brain the baton is the message that's being sent. This message gets passed through the brain from brain cell to brain cell until it gets delivered to the right part of the brain.

Tell me how you get Huntington's Disease

You might have more than one person in your family who has HD.  This is because HD runs in families it is hereditary.  This means it can be passed from parents to their children. You might hear people talking about genes (say: jeenz).  Your body is made up of millions of cells and your genes are contained in each of these cells.
Genes contain instructions for your body and decide things like what colour your hair is, how tall you are and the colour of your eyes. They are often called the building blocks of your body.  People might say that you look like other people in your family this is because of your genes.  Genes are passed to you from your parents that's why you might have freckles like your dad, or brown eyes like your mum. 
You have about 30,000 different genes in your body.  Sometimes genes don't work properly and they cause people to become unwell.  HD is caused by a gene that doesn't work properly.  This gene is what makes the brain cells die nobody knows why.  Lots of scientists and doctors are trying to work out why and hopefully find a cure for HD. We know a lot more about this gene now than we used to and are learning new things about how it works all the time.

If your parent has HD, there is a chance that you might get HD when you're older.  BUT there's the same chance that you wont get HD at all, and hopefully the scientists will have found a way to make people  with HD better by then
HDSA's overview explaining Huntington's Disease and the Biography of Dr. George Huntington who the disease was named after.