While February may be known for Valentine’s Day candy and flowers, it is also American Heart Month!
Within the dystrophinopathy community, keeping heart health front and center is especially critical. It is estimated that around 67% of mothers of children with Duchenne muscular dystrophy and nearly 90% of mothers of children with Becker muscular dystrophy carry a variant in the dystrophin gene. Due to this variant, carriers are at risk of serious heart concerns, such as developing cardiomyopathy and/or irregular heart rhythms. It is important to note that carriers may have cardiac involvement without any muscle symptoms.
Proactive cardiac care, including routine monitoring and early intervention, can make a meaningful difference. This care should include:
- Regular cardiology visits, starting in the late teens or early adulthood
- Each screening visit should include:
- Heart imaging, such as:
- Echocardiogram
- Cardiac MRI
- Heart rhythm testing, such as:
- ECG
- Extended Holter monitoring
- Heart imaging, such as:
- If results are normal, screenings should be repeated every 3–5 years
- Cardiologists may also order blood tests to check for heart inflammation
If cardiac issues are found, they should be treated by a cardiologist who is familiar with heart failure and, if possible, knowledgeable about Duchenne and Becker. They may recommend starting medications aimed at protecting the heart.
To help connect carriers with appropriate expertise, PPMD has compiled a nationwide list of specialists with experience in carrier care. Additionally, this list of scientific publications can be shared with medical providers to help support care, manage symptoms, and assist with insurance coverage.
PPMD Resources
All carriers should also consider joining The Duchenne Registry, PPMD’s online patient report registry, to help strengthen research & care for the dystrophinopathy community. Carriers can have an account for themselves as well as each child with Duchenne or Becker. Please visit the Registry website to learn more, or email coordinator@duchenneregistry.org.
Do you need carrier testing? PPMD’s Decode Duchenne Program provides free genetic testing for individuals who have symptoms of dystrophinopathy as well as at-risk family members. For any questions, please email decode@parentprojectmd.org.
For more information, please download our Carrier One-Pager or our comprehensive guide for Carriers in English or Spanish!
Upcoming PPMD Carrier Meeting: Feb. 11, 2026
Interested in connecting with other carriers and learning more? Please join our next monthly carrier meeting on February 11 | 12:00 PM ET featuring Dr. May Ling Mah with an update on the Nationwide Studies in Carriers!
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