Thrive with your MYH7 Gene
Whether your result is new or you’ve lived with it for years, connect with others who share your gene and stay close to the latest research and clinical trials that could help you live a healthier life.
Join the MYH7 communityHave a different gene? Search here.
“When my result came back, I felt completely alone. Finding people who truly understood changed everything.”
Maria, 47
Living with the MYH7 cardiomyopathy gene
“My diagnosis explained my family history, and let me take action to protect my kids.”
Christy Johnson
Living with a DSP cardiomyopathy gene
“The community answered questions I didn’t even know how to ask. I finally feel in control.”
James, 34
Caregiver to father with TTN cardiomyopathy gene
Your MYH7 quick-start guide
You don’t need to figure everything out today. Here’s what matters now, and what can wait a few weeks.
What you can do today
Join the MYH7 email list. New MYH7 trials and findings are emerging quickly. Fill out the form below to receive updates about future research and clinical trial opportunities.
Connect With Others: You don’t have to process this alone. Join the MYH7 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others on the same path.
Learn Through Video: Check out our recorded webinars with real patients, real doctors, and plain language.
Talk With Someone Who’s Been There: Not sure where to start? Email us with your questions at info@geneticcardiomyopathy.org
- Learn More:
Explore these trusted organizations for additional information and support:
- DCM Foundation: Learn more about dilated cardiomyopathy, inherited heart disease, patient education, and support resources.
- Foundation for Inherited Arrhythmias: Learn more about heart rhythm disorders, inherited arrhythmias, family screening, and patient support.
- HeartCharged: Learn more about inherited heart conditions through patient stories, education, advocacy, and support.
Building your care plan
Find a Specialist. Not all cardiologists specialize in cardiomyopathy or inherited heart conditions. In the coming weeks, connecting with a Cardiomyopathy Specialist can make a meaningful difference in how your care is guided.
Establish a Baseline. Your care team may recommend heart testing, such as an echocardiogram or EKG, to understand your current heart function and create a reference point for the future.
Consider Genetic Counseling. A genetic counselor can help you better understand your genetic testing result, what it means for your health, and how to approach conversations with family members who may want to be tested.
Support Your Heart Health. Your care team will work with you to focus on protective measures like blood pressure management. Small, consistent steps will give your heart the best opportunity to stay strong.
Take these resources with you:
Download and print the Doctor Discussion Guide to help you feel organized and confident as you navigate your diagnosis.
Understanding the MYH7 Gene
The “Motor Protein” of the Heart
The MYH7 gene provides instructions for making beta-myosin heavy chain, one of the major proteins responsible for helping the heart muscle contract and pump blood with each heartbeat. It acts like part of the heart’s internal “motor,” generating the force needed for the heart to beat effectively.
What happens when MYH7 is not working properly?
When the MYH7 protein is not working as it should, the heart muscle may have trouble contracting normally. Over time, this can cause the heart muscle to become thickened, stiff, weakened, or less efficient at pumping blood.
Many people with MYH7 variants develop hypertrophic cardiomyopathy (HCM), while some individuals may develop dilated cardiomyopathy (DCM), restrictive cardiomyopathy (RCM), or features of more than one condition. Some people may also experience arrhythmias (abnormal heart rhythms), fatigue, shortness of breath, chest discomfort, or exercise intolerance.
What this means for your care
Because MYH7 variants can lead to gradual changes in the heart muscle, regular monitoring is essential. Your care team will use these checkups to assess your risk for arrhythmias and determine if a protective ICD is appropriate for you.
Because MYH7 cardiomyopathy is genetic, your family members may also benefit from testing. Parents, siblings, and children each have a 50% chance of carrying the same variant. Click here for practical tips on talking with your family members about your genetic results.
You did not cause this. Genetic variations are a natural part of human biology. Knowing this information now gives you and your care team a powerful tool to protect your heart health and guide your long‑term care.
Why Specialized Care Matters
Because MYH7 variants are unique, your care should be too. While a general cardiologist is a great starting point, managing genetic cardiomyopathy usually requires a cardiomyopathy genetics specialist.
To find a cardiomyopathy specialist, please click here.
“In a community matched to your exact diagnosis, families get support that helps them thrive.”
Sharisse Jiminez
Genetic Counselor
“Connecting with families who share your diagnosis can provide support, understanding, and sense of community.”
Sharisse Jimenez-Cyrus
Genetic Counselor
Watch a 2-minute message from our Executive Director, Greg Ruf
Connection & Support for MYH7 Cardiomyopathy Patients
You are part of a supportive community.
“Finding the MYH7 result felt like finally getting the owner’s manual for my heart.”
If you would like to connect with others, you can join our private MYH7 Cardiomyopathy Facebook community to ask questions, share experiences, and hear from others walking a similar path.
Watch & Learn about MYH7 Cardiomyopathy
Real patients, real doctors, real stories. Watch when you’re ready.
MYH7 Kinship by Greg Ruf | 1 min.
Hope for MYH7 & TTN DCM Patients with Dr. Neal Lakdawala | 5 min.
Sarcomeric Genes with Dr. Luisa Mestroni | 15 min.
MYH7 Clinical Trials & Research
Progress in this field is steady and continually evolving. We currently know of more than 30 companies that are working on potential new cardiomyopathy therapies (mostly gene-specific), but many have not reached the clinical trial phase yet. We encourage you to visit our clinical trials and research page to view available opportunities that might be right for you.
Be sure to fill out the form below so that we can contact you when we know of any relevant trials or research opportunities. Staying connected means you remain part of the progress, even before specific clinical trials or research studies exist.
DES Webinars
BAG3 DCM Gene Therapy Clinical Trial Studies Webinar – 4.15.2026 | 61 min.
Affinia BAG3 DCM – UPBEAT Clinical Trial Webinar- 6.10.2026 | 1 hr 6 min.
Frequently asked questions about MYH7 Cardiomyopathy
What is the MYH7 gene?
The MYH7 gene provides instructions for making a protein that helps heart muscle contract. Certain disease-causing MYH7 variants can affect how the heart works. MYH7 is one of the most common genes linked to inherited hypertrophic cardiomyopathy (HCM). A genetic counselor can explain what your specific result means.
What types of cardiomyopathy are linked to MYH7?
MYH7 variants are most commonly associated with HCM, in which the heart muscle becomes thickened. Some disease-causing variants are linked to dilated cardiomyopathy (DCM) or restrictive cardiomyopathy (RCM). The heart findings depend on the particular variant and the person, so your genetic result needs to be considered alongside your heart tests.
Does having a MYH7 variant mean I have cardiomyopathy?
Not necessarily. Someone can inherit a disease-causing variant before any heart changes or symptoms are detectable. A variant of uncertain significance (VUS) does not establish a genetic diagnosis on its own. Ask a genetic counselor what your specific result means and what heart screening is appropriate for you.
What symptoms should I tell my care team about?
Tell your care team about shortness of breath, chest discomfort, palpitations, dizziness, fainting, or a change in how much activity you can manage. Some people have few symptoms even when heart changes are present. Keep your recommended checkups, and seek prompt medical evaluation for unexplained fainting.
Can MYH7 affect muscles outside the heart?
Yes, some MYH7 variants cause conditions involving the muscles used for movement. This does not mean that everyone with MYH7-related cardiomyopathy will develop muscle weakness. Tell your care team if you notice new or progressive muscle weakness so they can decide whether further evaluation would help.
Should my family members have genetic testing?
If you have a pathogenic or likely pathogenic MYH7 variant, a genetic counselor can help identify relatives who may benefit from targeted testing and heart screening. MYH7-related HCM usually follows an autosomal dominant inheritance pattern: each child of someone with a disease-causing variant has a 50% chance of inheriting it. Inheriting it does not predict exactly when or how heart changes will develop.
What follow-up care might I need?
Your specialist may recommend an electrocardiogram (ECG), an echocardiogram, or heart rhythm monitoring. The results help your care team look for changes and decide whether treatment is needed. Your follow-up plan should reflect your heart findings, symptoms, family history, and specific variant.
Where can I connect with others affected by MYH7 cardiomyopathy?
GCAC’s MYH7 support group offers a place for patients and families to share experiences and find support. Sign up via the form below.
Join the MYH7 community
Be the first to know about new research, clinical trials, and helpful resources for people and families affected by MYH7 variants.
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Your Choice: Opt-in or out of communications at any time.
Have a different gene? Search here.
A Message of Hope
Many biopharma companies and researchers are working on advanced treatments for genetic cardiomyopathies. We anticipate new clinical trials and research opportunities in the near future. You found this community at the right moment. Welcome.