If you or a family member has been diagnosed with cardiomyopathy and your doctor does not know what caused it, then you should get genetic testing. Also, if you suspect that genetic cardiomyopathy runs in your family, you should also be tested.
A large percentage of cardiomyopathy that is of an unknown cause is inherited or genetic. Getting tested could improve and save your life, as well the lives of those you love.
Follow the four-step journey below to learn more.
Should I Get Genetic Testing?
Important reasons you may want to get genetic testing for cardiomyopathy:
- Nearly 50% of all cardiomyopathy diagnoses have a genetic component.
- Guidelines published by the American College of Cardiology, American Heart Association and Heart Failure Society of America all state that patients with cardiomyopathy that is NOT caused by heart attack or coronary heart disease should get genetic testing.
- It is a simple process. You can be genetically tested at your cardiologist’s office or at home with a spit test sent through the mail.
- Some or all of the costs of genetic testing and counseling may be covered by health insurance.
- It can save your life!
Pros & Cons of Genetic Testing
Your decision to get genetic testing has the potential to impact not just your life, but your family and future. That’s why it’s important to have all the facts, so you can make an informed decision.
Reasons You Should get Genetic Testing
- MYself – Testing can help guide treatment. Understanding the specific genetic mutations associated with your cardiomyopathy may change your treatment and save your life.
- MYfamily – Testing can help protect your loved ones. If you are diagnosed with a form of genetic cardiomyopathy, other members of your family may have the same genetic mutation.
- MYlegacy – Testing can advance research and save lives. You can choose to participate in research studies and clinical trials to help researchers find a cure for genetic cardiomyopathy.
Issues to Consider
Life Insurance and Long-term Care Insurance companies are still able to discriminate against positively-identified genetic tests. It is important to understand how this may impact you and your family. If you think you will seek life or long-term care insurance sometime in the future, you should talk with your insurance agent before receiving genetic testing.
Getting Genetic Testing
Genetic testing and genetic counseling is often covered by insurance. Getting genetic testing is surprisingly simple and affordable.
Getting testing for cardiomyopathy is done by a simple saliva sample. In partnership with the Dilated Cardiomyopathy (DCM) Foundation, we’ve created a list of genetic testing companies that make the testing process as simple and affordable as possible. To start the testing process, simply click the link below to connect directly with genetic counseling and testing companies.
GET TESTED TODAY
These are the steps you can expect to take in your genetic testing process:
- Order the test.
- Work with your insurance companies to cover the cost.
- A simple saliva test will be sent to your home.
- Spit into the tube provided and mail it back in the enclosed envelope as instructed.
- Test results will be mailed directly to you. (We advise you also share these results with your doctor.)
- Once you recieve your test results, we recommend that you schedule a post-test appointment with a genetic counselor to help you better understand your results.
Understanding Your Results and Next Steps
If you tested positive for a cardiomyopathy genetic mutation or tested negative but you suspect that genetic cardiomyopathy runs in your family… getting the right care is critical.
- 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.