Overview
Tropical endomyocardial fibrosis (EMF) is a serious heart disease that mainly affects people living in tropical regions of the world. It causes scar tissue (fibrosis) to build up inside the heart, particularly in the lower chambers (ventricles). Over time, this scarring makes the heart walls stiff and reduces the heart's ability to fill with blood properly. The disease can affect the right side of the heart, the left side, or both sides at the same time. It is also sometimes called tropical restrictive cardiomyopathy. As the scarring progresses, the heart becomes less efficient at pumping blood around the body. This leads to symptoms of heart failure, such as swelling in the legs and abdomen, shortness of breath, and extreme tiredness. The valves inside the heart can also be affected, causing blood to leak backward. In some cases, blood clots can form inside the heart, raising the risk of stroke. Treatment focuses on managing symptoms of heart failure using medications such as diuretics (water pills) to reduce fluid buildup, and blood thinners to prevent clots. In more advanced cases, surgery to remove the scar tissue (called pericardiectomy or endocardiectomy) or to repair heart valves may be considered. There is currently no cure, and the disease can progress despite treatment, making early diagnosis very important.
Also known as:
Key symptoms:
Swelling of the legs, ankles, or feetSwollen or bloated abdomen due to fluid buildupShortness of breath, especially when lying down or during activityExtreme tiredness and low energyRapid or irregular heartbeat (palpitations)Chest pain or discomfortCoughing, sometimes with pink or frothy mucusReduced ability to exercise or do physical activityFainting or dizzinessWeight loss and poor appetiteBluish tinge to the lips or fingertips (in severe cases)Stroke-like symptoms if a blood clot travels to the brain
Clinical phenotype terms (48)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Tropical endomyocardial fibrosis.
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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 Tropical endomyocardial fibrosis.
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Caregiver Resources
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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.Which side of my heart is affected, and how severe is the scarring right now?,What medications do I need, and what are the side effects I should watch for?,Am I a candidate for surgery, and what would that involve?,How often do I need follow-up echocardiograms or other heart tests?,What warning signs should make me go to the emergency room immediately?,Are there any dietary or activity restrictions I need to follow?,What is the likely progression of my disease, and what can I do to slow it down?
Common questions about Tropical endomyocardial fibrosis
What is Tropical endomyocardial fibrosis?
Tropical endomyocardial fibrosis (EMF) is a serious heart disease that mainly affects people living in tropical regions of the world. It causes scar tissue (fibrosis) to build up inside the heart, particularly in the lower chambers (ventricles). Over time, this scarring makes the heart walls stiff and reduces the heart's ability to fill with blood properly. The disease can affect the right side of the heart, the left side, or both sides at the same time. It is also sometimes called tropical restrictive cardiomyopathy. As the scarring progresses, the heart becomes less efficient at pumping blo
How is Tropical endomyocardial fibrosis inherited?
Tropical endomyocardial fibrosis follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Tropical endomyocardial fibrosis?
10 specialists and care centers treating Tropical endomyocardial fibrosis are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.