Our nurse team understand that some people might feel uncertain about what a cardiomyopathy diagnosis might mean for their family or future children. You might want to ask about inheritance -whether cardiomyopathy can run in families clinical screening (tests) or want to know more about genetic testing. Many people tell us they feel unsure about where to start or feel overwhelmed by trying to piece information together on their own.
Our Genetic Advice Helpline is available to help provide you with support and information, helping you to make informed decisions about what you feel is best for you and your family. Our specialist nurse team have experience working in inherited cardiac conditions such as cardiomyopathy, - and are here to offer you a confidential safe space to talk. We can provide you with answers to your questions -, support, advice and guidance.
How we can help
Our specialist nurse team will arrange a call back within our working hours to talk through any questions you have about cardiomyopathy and your family, whether you are at the very beginning of your journey, have been diagnosed for a while or are aware that a family member has been diagnosed with cardiomyopathy
Our nurse team can help you to:
For many people, the first step is understanding whether cardiomyopathy could run in your family. We can talk through your family history information and if you have been asked to complete a family history questionnaire, we can help, so you feel confident you are giving accurate and useful information.
If screening or specialist assessment is advised, we can provide a supporting letter by email for you to give to your GP. Our letter will advise on national guidance and why a referral to a specialist inherited cardiac conditions service would be advisable. We know that some of our community find it difficult to explain to their GP about their family history, we can help you in this conversation.
Genetic testing can feel like a big step, especially if you are not sure what the results might mean.
We can explain:
• how testing works
• what happens during the process
• how long results usually take
• what different types of results mean
• what testing can and cannot tell you
We also talk through the practical and emotional sides of testing, including what it might mean for children, siblings or wider family members. NB; Our nurse team cannot provide interpretation of clinical results including genetic variant reports or direct to consumer genetic testing results.
If you already have been referred for genetic testing we can provide you with support and explanations around terminology. Our nurse team can provide you with information about family screening for first degree relatives and what this might involve for them.
Sometimes people call because they feel worried, confused or unsure about how to talk to their family. Others simply want to check they have understood information correctly. Whatever your situation, our nurses offer a safe space to ask questions and feel supported.
Alongside our nurse helpline, we offer a range of useful resources so you can explore information in a way which suits you best:
• Nurse Led Genetic Online Support groups
where you can meet other people affected by cardiomyopathy and ask questions in a friendly group setting
https://www.cardiomyopathy.org/find-support-groups
• Our dedicated YouTube channel
has specialist nurse webinars about genetics and genetic testing from an NHS genetic counsellor Specialist Nurse Webinars - Genetics - Emma O'Malley
• Our podcast episode Cardiomyopathy, is it all in the genes,
which explains inherited risk in plain English
https://www.youtube.com/watch?v=KaxPrmw85vk
These resources are great if you want to build your confidence with the basics or share clear explanations with family members.
Speak with our Nurse Specialists
Call our Nurse Helpline:
📞 0800 018 1024
🕒 Monday to Friday, 8.30am to 4.30pm (not open on bank holidays)
If you prefer online support, you can also reach us through website live chat at www.cardiomyopathy.org