Kids Under 12
What is Huntington's Disease?
Huntington's Disease is an illness that affects the brain. Messages that used to be sent to and from the brain now get all tangled up. This causes the body to make mistakes when it moves and it also makes thinking harder to do. Overall, everything we do becomes harder and harder for a person with Huntington's Disease.
People get HD when they're older - most people start to become unwell between the ages of 30 and 50.
What happens when someone has Huntington's disease?
When someone has HD they may change and start to behave differently. They may not be able to walk and talk as well as before, and they may be more forgetful. Sometimes they may have a bad-temper and get angry about little things. All of these changes happen because HD is slowly changing the way their brain works.
Why does Huntington's disease change the way people move or behave?
When someone has HD, some of their brain cells become sick and start to die. We all have millions and millions of tiny little cells in our brains. They are very important for everything we do, from watching TV to riding our bikes. When these cells begin to die, doing each of these activities becomes harder and harder. Lets think about the brain as a relay race - each runner passes the baton onto the next runner, who then does his or her lap. They pass the baton on to the next runner until they reach the finish line. If someone drops the baton, that team doesn'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.
Here's another example: Let's say you want to kick a soccer ball; the ball is on the ground in front of you. First, your eyes send a message to your brain letting it know where the ball is on the ground. The brain then sends a message all the way down your leg, telling your leg to kick the ball. See, just like the relay race, all the cells in your brain and body must work together in order to get things done. When someone has HD, the message is lost along the way; the brain cells drop the baton because they are slowly being damaged. As a result someone with HD might miss the soccer ball. Sometimes people with HD also have a hard time walking, this is because again the message is not getting through. The feet never get the right signal from the brain to do what they are supposed to do. When the message or baton is not delivered, the person with HD may trip, lose their balance or fall down.
How do 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. 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 mom. 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 figure out why the brain cells die and then they can find ways to stop them. 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 won't get HD at all, and hopefully the scientists will have found a way to make people with HD better by then.
How long does Huntington's Disease last?
People with HD can be unwell for a long time. This is because the brain cells die slowly over many years. They may live at home for a while and need lots of looking after. After a while they may go to a special home to be looked after by nurses and doctors. These people will take very good care of them, and you can still go and visit them in the home.
Coping with how you are feeling
Sometime it can feel unfair that you have to cope 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 might bring.
It is okay to feel angry, sad, confused, embarrassed, worried or guilty about what is happening. Adults have these feelings too. The best thing to do is to talk to your parents, your teachers or your friends about it. The more you talk the better you'll feel. Don't be scared to ask questions. If you feel that you don't have anyone to talk to send us an email, and we'll find you someone who understands what you are going through.
Hopefully we've been able to answer your questions. If you still aren't sure about something and you have a question, shoot us an email at ypahd@yahoo.ca
