Frequently Asked Questions

These are some of the most commonly asked questions from children and young people:

1.      Can I catch HD?

You can’t catch HD but if your mum or dad has it there is a chance you may get it when you grow up. But there’s the same chance that you won’t get HD at all and you may live until old age without getting it.

2.      Is it in your brain or in your blood?

Huntington’s disease is an illness that affects the brain. Our brain works a bit like a computer, sending messages to other parts of the body that control how we think, eat, walk and talk. If it is not working properly the messages are not clear and our body cannot work properly.

3.      How do you get HD? 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. Find the full answer under the Children link on the website menu.

4.      Can my brother/sister get HD? If your mum or dad has it there is a chance that your brother or sister may get it when they grow up. But there is the same chance that they might live until old age without getting Huntington’s disease.

5.      What happens if I don’t have it? When you are older you may find out that you will not have HD. This means that you will not get the disease nor can it be passed on to any children you might have. You will still have all the choices to make about your life like you did before e.g. what job to do, where to live, whether to have children or get married. It just means you will be able to make these decisions without worrying about getting HD in the future.

6.      Why my family? Why not someone else? It is natural to wonder why this illness has happened to you and your family. It can feel unfair that you have to deal with all this stuff when other people don’t. You may feel many different things about all the changes HD can bring – confused, worried, angry, sad, embarrassed, alone. But you and your family are not to blame for HD and NONE OF THIS IS YOUR FAULT. It is a disease we still have a lot to learn about and no one knows exactly where it came from or why.

7.      How did the very first person get HD? No one knows just where Huntington’s disease comes from. Usually it is passed down from parents to their children, and in very very rare cases it can just happen to someone out of the blue (this is called a spontaneous genetic mutation).

8.      Why is it called Huntington’s disease? The earliest writing about HD dates back as far as the sixteenth century but in 1872 a doctor from New York wrote one of the best descriptions of HD. He was called George Huntington. It used to be called Huntington’s chorea because of the movements most people with HD develop. Now people know that the disease causes other changes so the name was changed to Huntington’s disease. HD for short.

9.      Are doctors able to help the person with HD in anyway? Although doctors can’t make the illness completely better, they can give medicines to make it easier for people with Huntington’s disease to walk, talk and think.

10.   How can I help the person with HD? There are different ways in which you can help the person with HD. Here are some:

Get information
It is important to get the information that you need, particularly if you want to understand why the person with HD behaves and moves the way they do.

If you have any questions see if the answers are anywhere on this site. If you are still not sure what something means please ask. There is an ASK service on this site so that you can email your questions and we will answer them for you. You can also phone the Youth Project on 01224 589049.

Help out at home
The person with HD may live at home and need looking after. This may mean that everyone in the family has to do things they aren’t used to doing, or didn’t do as much before the person with HD became unwell. You might be helping to look after them too e.g. by helping around the house, looking after younger brothers and sisters etc. This means you are a Young Carer – you help to care for someone in your family who is not well. It is good to help but make sure you get time for yourself to do things you enjoy.

If you help out a lot at home, see if there is a Young Carer’s Group in your area. If you join one of these groups you will meet other young people who help to look after a family member – they won’t all have HD in their family but they’ll still have some similar stuff to talk about. Plus you get some time out and the chance to have some fun!

Check out this site: http://www.youngcarers.net/ for more info about young carers

Look after yourself
It’s very important to look after yourself when difficult things are happening. Learning how to take care of yourself can be hard and you need to learn when to ask for help or when to take some time out. See some of the other sections on this site, for example, ‘Give me some advice about living with HD’ (in the children page) and ‘How do I cope with living with HD?’ (in the young people page).

11.   Will the person with HD die? Once people develop HD they have it until they die. However, people do not die from HD but from other related causes, in particular many people die of pneumonia.

12.   When do you think the person with HD will die? Some people have lived for 30 years with the disease but most people live from 15 to 25 years after the disease begins to show.

13.   Why does the person with HD behave and move the way they do? These are some of the questions children have asked:
Why do they say horrible hurtful things? Why do they move around all the time? Why do they get angry so quickly? Why do they do silly things like cross the road, when they shouldn’t? Why do they sometimes ignore me when I talk to them? Why do they forget things in the past?

Because of the way HD affects the brain, people with HD can change a lot as they become more unwell. There can be lots of changes to cope with. They may not be able to do things with you the way they used to. They may sometimes get angry for what seems like no reason and be rude to you. Try to remember it is the illness that makes them do this.

HD can make people change in three main ways: physically, emotionally and mentally. But remember that everybody is different so the person you know with HD may not have changed in all of these ways.

14.   Will my mum/dad be the same as my grandma/grandpa or not? Huntington’s disease does not affect everybody in the same way and no-one can predict exactly how it will affect somebody or when. However, there are typical ways in which HD affects people

15.   Will the person with HD ever forget me?

It is unlikely that the person with HD will forget you, but when the illness gets worse it can become harder for them to communicate or remember things in the short term. And even though they may struggle to do some tasks this doesn’t mean they do not know what’s going on around them. They will still know who you are, and want to hear about how things are going with you!

16.   I sometimes think horrible things about the person with HD, can you help me stop? Even when you know that the person with HD is ill you can still feel hurt, angry, embarrassed and upset by them. It is natural to have these feelings, especially if the person with HD is very different from the way they were before. Try to remember that it is the illness that causes these changes. It is not your fault, or theirs. There are things which you can do to help you cope with your own feelings and take care of yourself.

See sections on ‘feelings’ (under children on the site menu)

17.   Should I tell other people e.g. friends, teachers about HD in my family?

It can be hard to know if you should tell other people about HD in the family.
Most people have never heard of it. So some people will understand and some won’t. It’s probably better to be open with the important people in your life because they can help you when things are tough. Make sure you choose a time when you’ve got time to talk and are feeling calm. But remember it’s up to you who you choose to tell and when. You might decide to tell a few now and more later. Trust your feelings, if it feels right go for it, if not don’t.