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Huntington's Disease Youth Organization

Conversation starters

HDYO has more information about HD available for young people, parents and professionals on our site:

Talking about HD with Young People

Talking with children about Huntington’s disease (HD) can be difficult. What do you say? Where to start? How to approach the topic? How much information to provide? There are plenty of questions to think about before you go ahead and discuss this information with children. Other sections on this website provide great advice on talking with children. However, this section focuses on some examples of conversation starters with children of different ages, as well as some questions children may ask in response to this discussion about HD. You may find some of these examples helpful in planning out your own approach to talking with the children about HD. Take note, these are just examples, it is important you find your own words that you are comfortable with when talking with the children. But hopefully they will spark some ideas for you.

Young Children (preschool age) Conversation Starters

Young children tend to have a shorter attention span, so it may help to keep explanations of HD short and simple.


Older Children (preteens) Conversation Starters

Children of this age are usually capable of understand the basics of a genetic condition and have access to far more information online than previous generations had. You may be able to give your child more detail about what HD is. It is best coming from the parents/guardians.


Teen Conversation Starters

Teenagers are able to take in a lot more information and generally have an understanding of what a genetic condition is, depending on where you are in the world. Teens may want to know plenty about the condition and the hereditary nature of it (if appropriate).


Encouraging children to share their thoughts and feelings

It is important that any discussion about HD is a two-way conversation. Therefore asking the child or children questions which encourage feedback is useful to learn what the child is thinking about or whether they have any questions about what you have just told them. You could ask:


Answers for questions children may ask regarding HD

With the discussion about HD children may be keen to ask questions, often asking many at once. It can sometimes be difficult to respond to these questions straight away if you are trying to be careful about how much information you give. At HDYO, we would encourage you to be honest with your answers and decide for yourself how much information the child or children can cope with. Here are some examples.

Q. Is Mom/Dad going to die from HD?

A. People with HD can live for many years, even decades. We don’t know for sure when any of us will die. Instead we focus on making the years we have count and creating some good times together.

Q. How did Mom/Dad get HD? Why did this happen to our family?

A. When Mom/Dad was born, she inherited the expanded gene that causes HD from her parent.

Q. What did I do to make Dad behave this way?

A. The behaviour is caused by HD – it makes people do things they don’t mean to do sometimes - it was not your fault. Your Dad loves you and HD does not change that.


Q. Am I going to get HD?

A. Every child of a person with HD has a 50/50 chance of inheriting HD. But it is usually a condition which affects people later in life and researchers are making great progress with treatments at the moment.

Q. Are my brothers/sisters/cousins going to get HD too?

A. Anyone who has a parent with HD has the same 50/50 chance of inheriting HD from that parent. It is like tossing a coin for each person. Each time the coin is tossed there is a 50% chance it will be either heads or tails. The coin does not remember what it landed on the previous time for the previous family member. Each toss of the coin is individual in this sense.

Q. How do you know if you have HD or not?

A. Some people start experiencing symptoms and go to a doctor to check on what they could be. Other times people take a genetic test to find out if they will get HD in the future. But you have to be 18 to take that test and most people don’t because it is a very big decision to make which takes a lot of thought.

Q. What kind of a life am I going to have if I have HD?

You can live a very normal life and achieve the goals you want to achieve. The risk of HD should not stop you from going after your dreams in life and enjoying the journey along the way.

Q. Why isn’t there a cure?

A. It is a very difficult challenge to find treatments to cure conditions like HD. Researchers are working incredibly hard to try and make that happen, but it takes time. There has been a lot of progress in research for HD and some exciting possible treatments are being worked on right now. There is hope that more treatments will be available in the future, that will help people with HD live a better life. But right now, that is just realistic hope, not certainty.

Q. How am I supposed to handle this?

A. Know that you are not alone, we are here to support you, and there are plenty of young people going through similar situations. is a good place to start when looking for information and support.

Q. What will happen when Mom gets sicker?

As time goes on, there are going to be changes and decisions to be made. We will always keep you involved and up-to-date in those, so we can plan for the future together as a family.

Q. Why didn’t you get the test before you had me?

A. The option to test was not available when I was younger.

A. We didn’t know there was HD in the family.

A. We wanted to have children and enjoy life, no matter what.

If you, as a parent or guardian, have any additional conversation starters or questions and answers, you can send them in to HDYO using the feedback box below.

We’d like to thanks HDSA’s Talking with kids about HD as a source of most of the content above. The book can be found on our book shelf.

Last updated: May 13, 2014 10:24