Your children

You should tell your child and your other children about the diagnosis soon. Children can usually sense when their parents are upset and worried. They can feel unsettled if they know something is wrong, but they don’t know what it is.

The most important thing is to make sure that what you say is truthful, age-appropriate and makes sense to your child.

You only need to share what you are comfortable with sharing. You may choose to tell your child that they have DMD using words like: ‘The doctors have told us that your muscles are different to other children’s – and this will make it harder for you to do some things. There are lots of people around the world working really hard to find ways to make this better. There isn’t any medicine that will fix it at the moment, but there are a few things we can do that will help (like stretching).’

Try to keep focused on the here and now. Talk about it what it means in the short term. Avoid looking too far ahead. You can then build on this information slowly over the years as they start to ask questions.

For further advice on what you should say to them and how you should answer their questions, please read Chapter 2 – Child and Family of our DMD Family Folder

Grandparents, Family and Friends

If you can, ask for help from grandparents, family and friends. They can make a big difference.

Your family, friends, and colleagues will probably not have heard of DMD before, and some people can be uncertain as to how to respond to this kind of news.

Providing them with information about DMD and how it progresses will build an understanding that will be helpful to them and also for you and your child.

When you’re ready to tell them, and others, including teachers and babysitters, we have produced a set of guides to help you explain DMD and ask for their support: