An introduction for parents and carers

“You are not alone”

Cardiomyopathy affects people of all ages, from the very young to older adults. Everyone’s experience varies, and depends on the type of cardiomyopathy they have. With the right treatment and
support, most people manage their condition and lead normal lives.

This booklet is about cardiomyopathy in children and young people. It covers different types of cardiomyopathy and why they happen, the symptoms and treatments, and the impact of the
condition. It covers topics that young people, parents and carers told us they would have liked to know about when they or their child was diagnosed. We also share the experiences of families
who have a child with the condition.

You may have picked up this booklet because you have a child with cardiomyopathy, or you know someone who does. Or perhaps you have been told that your child may have the condition, and you are waiting for tests to see if they do.

If your child has been recently diagnosed, you may have many different feelings. You may want lots of information to help you understand their condition, or you may be feeling in shock or overwhelmed, and not want to know anything right now. You may be worried about what you might read, or have heard something that has caused you concern. All of these feelings are natural. Don’t feel that you have to read this booklet straight away – you can pick it up as and when you want to.

”At first it’s really difficult to get your head around, but life does get back to some sort of normality.”

However you are feeling, whether you are new to the condition or your child has been diagnosed for a while, you are not alone. We are here to support you each step of the way.

Download Cardiomyopathy for parents and carers (PDF)

About this information

The content below was taken from our booklet 'Cardiomyopathy for parents and carers - an introduction to cardiomyopathy in children'. You can order a printed copy of the booklet here
The booklet was written with help from parents and carers of children with cardiomyopathy. Some gave us feedback through an online survey, and others shared their stories or reviewed a draft of this booklet.
We are grateful to everyone who helped us to create this booklet, and who kindly gave us permission to share their thoughts and experiences. 
Special thanks go to the following people for allowing us to share their experiences: Sarah and Marty Bishop, Sara and Rosie Day, Sabrina and Aaliyah Aries, and Steffi Moore.

©Cardiomyopathy UK. May 2017.

About cardiomyopathy

About cardiomyopathy in children

Read about the heart, types of cardiomyopathy and who it affects.

Read more here

Diagnosis and symptoms

Read about diagnosis, and symptoms including heart failure.

Read more here

Managing your child's cardiomyopathy

Read about who will look after your child, how to keep them well, activities and school.

Read more here

Support and services for parents

Find out about sources of support and services to help you.

Read more here

Treating cardiomyopathy in children

Read about medication, surgery and devices to treat cardiomyopathy.

Read more here

Exercise in children

Read our discussion about exercise in children with cardiomyopathy.

Read more here

How do parents and carers cope?

Read our discussion about coping with a child's diagnosis.

Read more here

Marty's story

Read about Marty's experiences of HCM, by mum Sarah.

Read more here

Rosie's story

Read about Rosie's experience of restrictive cardiomyopathy, by mum Sara.

Read more here

Aaliyah's story

Read about Aaliyah's experiences of DCM.

Read more here

Steffi's story

Read about Steffi's experience with HCM, in her own words.

Read more here