Overview
Familial atrial myxoma is a rare inherited condition where benign (non-cancerous) tumors called myxomas grow inside the heart, most often in the upper chambers (the atria). These tumors are made of a jelly-like tissue and can grow large enough to block blood flow through the heart or cause pieces to break off and travel to other parts of the body. This condition is also sometimes called Carney complex when it appears alongside other features like skin pigmentation changes and tumors in other organs, though familial atrial myxoma can also refer more narrowly to families where heart myxomas run without those extra features. The tumors can cause a wide range of symptoms depending on their size and location. Some people feel short of breath, have heart palpitations, or feel faint. Others may have a stroke or mini-stroke if a piece of the tumor breaks off and blocks a blood vessel in the brain. Fever and fatigue are also common, sometimes making the condition look like an infection at first. The main treatment is surgery to remove the tumor, which is usually very effective. However, because this is a familial (inherited) condition, tumors can come back or appear in other family members, so regular heart monitoring is essential for patients and their relatives. With careful follow-up and timely surgery, many people with this condition do well long-term.
Key symptoms:
Shortness of breath, especially during activity or when lying flatHeart palpitations or irregular heartbeatUnexplained fatigue or weaknessFainting or near-fainting spellsStroke or mini-stroke (sudden weakness, speech problems, or vision changes)Fever without a clear infectionUnintentional weight lossJoint pain or muscle achesSwelling in the legs or anklesSkin color changes or unusual freckle-like spots (especially in Carney complex)Coughing or wheezingChest pain or discomfort
Clinical phenotype terms (18)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Familial atrial myxoma.
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Specialists
View all specialists →No specialists are currently listed for Familial atrial myxoma.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Familial atrial myxoma.
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.Should I have genetic testing, and which gene should be tested?,Which of my family members should be screened, and how often?,How often do I need echocardiograms after my tumor is removed?,What are the signs that a new tumor may be growing, and when should I go to the emergency room?,Do I have Carney complex, and if so, what other organs need to be monitored?,Are there any activity restrictions I should follow before or after surgery?,What is the chance my tumor will come back, and what would treatment look like if it does?
Common questions about Familial atrial myxoma
What is Familial atrial myxoma?
Familial atrial myxoma is a rare inherited condition where benign (non-cancerous) tumors called myxomas grow inside the heart, most often in the upper chambers (the atria). These tumors are made of a jelly-like tissue and can grow large enough to block blood flow through the heart or cause pieces to break off and travel to other parts of the body. This condition is also sometimes called Carney complex when it appears alongside other features like skin pigmentation changes and tumors in other organs, though familial atrial myxoma can also refer more narrowly to families where heart myxomas run
How is Familial atrial myxoma inherited?
Familial atrial myxoma follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.