Home / Care Tools / Research / Care Tools Research

Care Tools Research

Individuals with myotonic dystrophy may have concerns about starting a family because of the risks of passing the disease to their children. Discussing family planning issues with a genetic counselor can help individuals make an informed decision. 

A recent study corroborated increased susceptibility to cancer in DM1, for women in particular, and linked the elevated risk to depressed levels of a tumor suppressor microRNA (miRNA). 

Many common DM symptoms become more severe during pregnancy, and women with DM have higher than average miscarriage rates, according to a study commissioned by MDF that examined data from the Myotonic Dystrophy Family Registry and the National Registry for DM and FSHD. Read a summary of the findings written by Katharine Hagerman, PhD, Research Assistant at Stanford University.

Community-led session. Hamsa and Steve Kiryakoza and Caroline Easterling discuss family planning methods for those living with myotonic dystrophy.

View related resources from this session

Reproductive Issues

Diagnosis of fertility issues of individuals (males and females) with myotonic dystrophy may include:

Testicular Atrophy

Primary hypogonadism in males (testicular atrophy) is usually not recognized until adulthood.  Symptoms can include:

New research on the impact of the mother's age on congenitally affected offspring.

...Are there any additional risks for an affected woman during pregnancy? Are there any precautions she should take if she becomes pregnant?

...And is there information on rate of successful pregnancy when the woman does not have DM?

Researchers have published several recent studies on advances in DM research.

Click here for a print-ready version of this page. 

Partners

© Myotonic Dystrophy Foundation. All rights reserved.