Understanding Your Genetic Test Results and Next Steps
Interpreting Your Results
A genetic test result for cardiomyopathy is not just a simple “yes” or “no.” It’s crucial to discuss your results with a genetic counselor to fully understand their implications for you and your family.
Did You Know?
There are many types of genetic mutations that can cause cardiomyopathy. By getting genetic testing, you are helping to advance research into potential treatments and cures for genetic cardiomyopathy.
Positive Test Result
What It Means
A positive result indicates that you carry a genetic mutation associated with cardiomyopathy. However, it doesn’t guarantee that you will develop symptoms or heart problems. It simply means that you have a genetic mutation that is known to cause genetic cardiomyopathy. Regardless, it’s essential, if you test positive, to begin a conversation with your physician or cardiologist. Remember: knowledge is power! Knowing you are at risk for developing genetic cardiomyopathy can help you identify and better manage your condition.
Next Steps
Consult with your physician or cardiologist. Early awareness of your risk can help you manage the condition proactively.
Negative Test Result
What It Means
A negative result does not necessarily mean you are not at risk for genetic cardiomyopathy. That’s because not all genetic cardiomyopathy shows up on current genetic testing.
Next Steps
If you suspect cardiomyopathy runs in your family, you should ask your genetic counselor about what to do next. You may need additional testing and family analysis to confirm you are not at risk.
Getting the Support You Need
Speak with a Genetic Counselor
During your testing process, it’s important to speak with your genetic counselor about your results and whether your immediate family should be screened for genetic cardiomyopathy. Learn more about genetic counseling.
Find the Best Care for Your Condition
Most cardiologists may not be heart failure specialists or equipped to best treat genetic cardiomyopathy. Find an advanced heart failure center or cardiologist that specializes in treating genetic cardiomyopathy.
Access Resources and Support
You are not alone. There are patient groups who can offer specialized resources and support. You can also connect with other patients and families who are managing the same form of cardiomyopathy. Explore our patient partner organizations below to find the community and resources that are right for you.
For further assistance, click the Additional Resources button below to find specialized care.
Support For You and Your Family
Connect with a global community of families, physicians and scientists to learn more about pediatric cardiomyopathy.
The Danon Foundation is a trusted resource for people affected by Danon Disease to find and share knowledge and to build community.
Providing support for patients and families with dilated cardiomyopathy through education, research and advocacy.
A key resource for patients diagnosed with hypertrophic cardiomyopathy.
A resource and support system for all heart patients and families impacted by heart disease, including cardiomyopathy.
A community of families and medical professionals supporting people with heart arrhythmia conditions.
Offering support and resources for patients or families with a mutation in the Titin gene.
The leading voice for the millions of American women living with or at risk of heart disease.
Living Outside the United States?
Here are organizations that can help support you on your journey.
An alliance of more than 50 cardiomyopathy and heart failure patient organizations from many countries advocating on behalf of those living with or affected by heart disease. Click to see if a support group is available in your country or geographic region.
The only charity in the UK supporting children, young people and adults living with cardiomyopathy, working to provide support and information, campaigning for better access to quality treatment, saving lives through raising awareness and providing hope through shaping research.