Overview
Peripartum cardiomyopathy (PPCM), also called postpartum cardiomyopathy, is a rare but serious heart condition that develops in women during the last month of pregnancy or within five months after giving birth. In this condition, the heart muscle becomes weakened and cannot pump blood as well as it should. This leads to heart failure, meaning the heart struggles to meet the body's needs for oxygen-rich blood. The exact cause is not fully understood, but researchers believe a combination of factors may play a role, including hormonal changes after delivery, inflammation, abnormal blood vessel responses, and in some cases, genetic factors. The most common symptoms include shortness of breath, swelling in the legs and ankles, extreme tiredness, and a racing or irregular heartbeat. These symptoms can be easy to overlook because they sometimes resemble normal discomforts of late pregnancy or the postpartum period, which can delay diagnosis. Treatment focuses on supporting the heart and managing heart failure symptoms. Medications such as beta-blockers, ACE inhibitors (used after delivery, not during pregnancy), diuretics, and blood thinners are commonly used. Many women recover fully with treatment, but some develop long-term heart problems. Early diagnosis and prompt treatment are key to the best possible outcome.
Also known as:
Key symptoms:
Shortness of breath, especially when lying flat or during activitySwelling in the legs, ankles, or feetExtreme fatigue or weaknessRapid or irregular heartbeat (palpitations)Persistent cough or wheezingReduced ability to exercise or do everyday activitiesFeeling dizzy or lightheadedChest discomfort or pressureNeeding to sleep propped up on pillows to breathe comfortablySudden weight gain from fluid buildupDecreased urination despite drinking fluids
Clinical phenotype terms (45)— hover any for plain English
Multifactorial
Caused by a mix of several genes and environmental factors
Adult
Begins in adulthood (age 18 or older)
FDA & Trial Timeline
2 eventsFederico II University
Dennis M. McNamara, MD, MS — PHASE4
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Peripartum cardiomyopathy.
2 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →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 Peripartum cardiomyopathy.
Community
No community posts yet. Be the first to share your experience with Peripartum cardiomyopathy.
Start the conversation →Latest news about Peripartum cardiomyopathy
Disease timeline:
New recruiting trial: Impact of Bromocriptine on Clinical Outcomes for Peripartum Cardiomyopathy
A new clinical trial is recruiting patients for Peripartum cardiomyopathy
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.How severe is my heart failure right now, and what does my echocardiogram show?,Which medications are safe if I am breastfeeding, and which ones should I avoid?,How will we know if my heart is recovering, and how often will I need follow-up echocardiograms?,Is it safe for me to become pregnant again in the future, and what are the risks?,Should I have genetic testing, and could my family members be at risk?,Are there any clinical trials or newer treatments I should know about?,What warning signs should make me go to the emergency room immediately?
Common questions about Peripartum cardiomyopathy
What is Peripartum cardiomyopathy?
Peripartum cardiomyopathy (PPCM), also called postpartum cardiomyopathy, is a rare but serious heart condition that develops in women during the last month of pregnancy or within five months after giving birth. In this condition, the heart muscle becomes weakened and cannot pump blood as well as it should. This leads to heart failure, meaning the heart struggles to meet the body's needs for oxygen-rich blood. The exact cause is not fully understood, but researchers believe a combination of factors may play a role, including hormonal changes after delivery, inflammation, abnormal blood vessel r
How is Peripartum cardiomyopathy inherited?
Peripartum cardiomyopathy follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Peripartum cardiomyopathy typically begin?
Typical onset of Peripartum cardiomyopathy is adult. Age of onset can vary across affected individuals.
Are there clinical trials for Peripartum cardiomyopathy?
Yes — 2 recruiting clinical trials are currently listed for Peripartum cardiomyopathy on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.
Which specialists treat Peripartum cardiomyopathy?
25 specialists and care centers treating Peripartum cardiomyopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.