Care for Carriers

Health Concerns

Most carrier females experience no symptoms of Duchenne/Becker muscular dystrophy. Some have mild muscle weakness, fatigue (a tired feeling), or cramping in their muscles. Rarely, a carrier has symptoms that are as severe as those of a male with muscular dystrophy.

Carrier females have an increased chance of changes to heart function. It is not yet known how common heart changes are, but some studies have estimated that 10-50% of carriers have heart changes. The large majority of carriers will never need heart treatment or have health effects. But because a small percentage of carriers may have serious heart concerns, it is important for all women who are carriers and women who are at risk to be carriers (for example, women with a son or brother with Duchenne/Becker muscular dystrophy) to have regular heart evaluations.

Screening

Women who know that they are carriers, or women who suspect that they might be carriers, should discuss heart screening with their doctors. Ideally, all carriers should have a heart screen in their early adult years. The best screening plan is not yet known, and so different healthcare providers might make different recommendations. The American Academy of Pediatrics recommends that carriers have a complete cardiac (heart) screening every at least every 5 years, starting at age 25 or 30. An appropriate heart evaluation may include an electrocardiogram (EKG) and echocardiogram. If there are any problems or potential problems found, the carrier may be referred a cardiologist.

To learn more:

  • “Information for Carriers, Potential Carriers, and Mothers of Affected Children” section of the DuchenneConnect website
  • American Academy of Pediatrics Section on Cardiology and Cardiac Surgery. Cardiovascular health supervision for individuals affected by Duchenne or Becker Muscular Dystrophy. Pediatrics 2005 116: 1569-1573.