What is Peripartum Cardiomyopathy (PPCM)?

Peripartum cardiomyopathy (PPCM) is an idiopathic, potentially fatal form of dilated cardiomyopathy that develops during the final month of pregnancy or within five months after delivery. More information about PPCM may be found on the NIH’s website: https://rarediseases.info.nih.gov/diseases/220/peripartum-cardiomyopathy.

What is the prevalence of PPCM?

PPCM is rare in the United States, Canada, and Europe. About 1,000 to 1,300 women develop the condition in the U.S. each year.

How is PPCM diagnosed?

PPCM is diagnosed when the following three criteria are met:

Heart failure develops in the last month of pregnancy or within 5 months of delivery.
Heart pumping function is reduced, with an ejection fraction (EF) less than 45% (typically measured by an echocardiogram).
No other cause for heart failure with reduced EF can be found.

Is there any specific gene/pathway in PPCM that has been identified?

There is no widely accepted genetic pathway connected to PPCM. However, a recent study shows that a mutation in the TTN gene may be the cause of a significant number of peripartum cardiomyopathies. More information may be found here: https://www.sciencedaily.com/releases/2016/01/160106215521.htm#:~:text=However%2C%20this%20research%20shows%20that,is%20caused%20by%20genetic%20mutations.

How is PPCM treated?

Cardiomyopathy without signs or symptoms may not need treatment. Treatment depends on the type of cardiomyopathy you have, the severity of your symptoms and complications, and your age and overall health. Common treatments of cardiomyopathy include lifestyle changes, medicines, nonsurgical procedures and implanted devices.

More information on treatment may be found here: https://www.nhlbi.nih.gov/health-topics/cardiomyopathy.

Are there any clinical trials underway for PPCM?

The National Institutes of Health (NIH) has completed 24 clinical trials for PPCM. Currently, there are 18 clinical trials underway for the condition. More information on future studies and patient recruitment can be found here: https://clinicaltrials.gov/ct2/results?cond=peripartum&term=&cntry=&state=&city=&dist=&Search=Search

How can RareShare be helpful to PPCM patients and families?

There is currently no peripartum cardiomyopathy (PPCM) Rareshare community. There are currently 0 active discussions underway. New discussions can help to connect patients, health workers, caregivers and families interested in SMS and provide them continual access to community resources.