Chat with Your Family

Starting the Conversation

Because genetic cardiomyopathy is an inherited condition, speaking to your family about genetic testing is one of the most important talks you should have during this process. From learning more about your family’s medical history, to helping a relative understand the impact of genetic testing and early diagnosis, we can help you navigate the conversation. 

We have also created an informational flyer that describes genetics and cardiomyopathy and we encourage you to share this with your family, friends and any other cardiomyopathy patients or patient groups. Click here to access this flyer.

Tips for Talking With Your Family 

  • Medical terms like “cardiomyopathy” can be confusing. Have definitions and resources handy to help them understand what this means for you.
  • Listen and answer the questions you can; write other questions down to ask your doctor or genetic counselor at a later time. 
  • Create a family tree that includes you, your brothers and sisters, your children and your parents. If possible, expand your family tree to include your nieces, nephews, aunts and uncles, grandparents and cousins.
  • If you feel comfortable, encourage them to get genetic testing so they can understand their risk for genetic cardiomyopathy.

Questions Your Family Might Ask About Genetic Testing

How does genetic testing work?

  • Getting testing for genetic cardiomyopathy is a simple process that can be ordered by your doctor or self-initiated with an at-home saliva sample. You can self-order a test through one of the genetic counseling or testing companies here, or speak to your doctor directly about ordering a genetic test. 

Is it expensive? Will my heath insurance cover genetic testing? 

  • This is a common, logical question. Unfortunately, it’s not possible to simply say “yes” or “no” to this, since every insurance policy is different. It’s also important to know that genetic counseling and genetic testing are billed separately, and coverage of one does not guarantee coverage of the other. With that being said, health insurance usually covers genetic counseling. Insurance companies have different policies, and may cover some tests, but not others. Some cover counseling and testing under specific circumstances, or insist that certain requirements are met before they agree to cover genetic testing.

What do my results mean for me and my family? 

  • An important part of the process is connecting with a genetic counselor. Not only can they help interpret your results, they can provide essential support and resources to help you and your family navigate next steps. Learn more about genetic counseling.

Questions Your Family Might Ask About Genetic Cardiomyopathy

What is genetic cardiomyopathy?

  • Genetic cardiomyopathy is caused by a genetic mutation, which may lead to a change or abnormality in your heart muscle or your heart rhythm that makes it harder for your heart to pump blood to the rest of your body, eventually leading to heart failure. There are currently 55-75 gene mutations that are known to cause genetic-based cardiomyopathy. Learn more about genetic cardiomyopathy. 

What does it mean if you test positive for genetic cardiomyopathy?

  • Testing positive isn’t a bad thing. It simply means you now have important information that you should share with your doctor. Even if you have a positive genetic mutation for cardiomyopathy, it may not progress for many years (or ever) to where it causes problems with your heart. But, by learning early on that you have a gene mutation associated with a specific form of cardiomyopathy, you can work with a cardiologist to create a treatment plan that can help you prevent or slow the potential onset of symptoms.

Can you treat genetic cardiomyopathy?

  • While there isn’t a cure (yet!) for genetic cardiomyopathy, there are treatments to help you manage the symptoms. Depending on your condition, your doctor could recommend the following treatments:
    •  Lifestyle changes such as changing your diet
    • Medications to help lower your blood pressure
    • Pacemaker and/or ICD to treat heart rhythm issues
    • Heart transplant
    • Other surgical or medical procedures to improve blood flow

Should I get tested, too?

  • Yes! If you have a family member who has been diagnosed with genetic cardiomyopathy, getting tested could help you understand your risk of inheriting the same condition and better manage your condition if you test positive.

What can we help you find?

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