Young People, Families, and Carers
Cardiomyopathy doesn’t just affect one person, it affects the whole family. Whether you’re a parent, sibling, partner, carer or young person living with the condition, it can bring emotional, physical and practical challenges. CMANZ provides information, understanding and support to help you navigate thcese.
Young People
For a young person, being diagnosed with cardiomyopathy can feel like a lot to take in. There might be new routines, regular appointments and limits on what you can do. It can also feel isolating when others your age don’t understand what you’re dealing with. You’re not on your own – many young people live full, active lives with cardiomyopathy.
Staying organised with your medications and appointments, knowing your limits, and keeping in touch with your care team all make a difference. If you’re starting work, university or moving into adult care, plan ahead and let people know what helps you manage. Most importantly, make time for friends, hobbies and things that make you feel good.
Support
Support and information is available for young people with heart conditions.
For connection to others with cardiomyopathy, you can join our private Facebook group.
In Australia, the Heart Foundation also has a private Facebook group for young people with all forms of cardiac disease.
For support and information, visit HeartKids.
For emotional support, check out Kids Helpline and HeadSpace
In New Zealand, visit the Heart Foundation and Heart Kids New Zealand.
For emotional support, get in touch with WhatsUp and Youthline
Parents and Families
When someone you love is diagnosed, especially a child, it’s normal to feel worried and unsure. With good medical care, healthy habits and regular check-ups, many children do very well.
Supporting someone with cardiomyopathy can be emotionally demanding. Encourage open conversations, be patient through good days and bad, and remember to look after your own wellbeing too. You are not alone – reaching out for help, from support groups, friends or professionals, can make a big difference.
Keeping your child’s school and sporting groups informed is an important step. Encouraging those who spend time with your child to learn about cardiomyopathy can help make your child feel supported. You may like to share our website and information resources. For assistance in talking with your child’s school or sporting group, please get in touch via info@cmanz.org.au.
Support
There is support and information available for parents and families in Australia and New Zealand. Visit the other the support links on this page – any or all may be relevant depending on what you may be seeking at this time
Additional excellent information, support and resources are available at the Children’s Cardiomyopathy Foundation.
Carers
Caring for someone with cardiomyopathy is an important but sometimes difficult role. You may be helping with appointments, medications or day-to-day activities, all while being concerned about the person’s condition. It’s easy to put your own needs last. Try to take regular breaks, share the load where you can, and keep an eye on your own health. Talking to others in similar situations, or reaching out for professional support, can help prevent burnout and remind you that you’re not alone.
Support
Help and information are available in both Australia and New Zealand:
Australia: visit Carer Gateway and Carers Australia.
New Zealand: visit Carers New Zealand.