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Heart

Care for the Heart

The information on this page represents the recommended standard of care for Duchenne muscular dystrophy. Most of the care recommendations also apply to Becker muscular dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both males and females with Duchenne. 

If you don’t understand any of the medical terms and concepts, ask your healthcare providers. Take notes and ask questions during your clinical visits.

Remember

Heart Facts to Remember

1. In Duchenne, the heart is already damaged before heart symptoms appear (cardiomyopathy). People with Duchenne may need to start heart medications even if they do not have symptoms of heart problems.
2. The heart should be checked every 1-2 years, starting from the time of diagnosis.
3. Keep a copy of your latest heart tests to show all of the healthcare providers who care for you. Other treatments for Duchenne, such as steroid use, may affect the heart.

 

Common Heart Problems

Duchenne affects your muscles, and the heart is a muscle too. As people with Duchenne get older, there are two common problems that may develop with the heart:

  • Heart muscle weakness and the heart not pumping blood properly
    Tests to help identify: An echocardiogram or cardiac MRI measures heart function. An echocardiogram is a sonogram or ultrasound picture of the heart. A cardiac MRI gives an even more detailed picture of the heart and heart function.

  • Heart rate or rhythm problems, including:
    • Tachycardia: heart rate is too fast; this is common in Duchenne and is usually harmless
    • Bradycardia: heart rate is too slow
    • Arrhythmia: heart beats in an abnormal rhythm

    Tests to help identify:
    An EKG checks heart rate and rhythm. An electrocardiogram has stickers that attach to your chest and measures the rate and rhythm of the heart.

Heart Damage

In Duchenne, the heart is damaged (cardiomyopathy) before symptoms appear. If you have one or more of the following symptoms, talk to your healthcare providers about seeing a doctor who specializes in caring for the heart (cardiologist):

  • More tired than usual
  • Weight loss
  • Vomiting
  • Belly pain
  • Not sleeping well
  • Trouble doing normal daily activities
  • Chest pain

Recommended Care

Below is the recommended standard care for the heart. Talk to your doctor about care options that go above standard care.

  • Check the heart on a regular basis
    People with Duchenne should get their heart checked every 1-2 years, starting from the time of diagnosis. There should be an echocardiogram (or echo) or cardiac MRI and electrocardiogram (ECG or EKG) at each cardiology visit. The doctor may also order special tests such as a Holter monitor, which is a portable ECG machine that is worn for 24 hours (or longer). The Holter monitor is used to watch your heart rate and rhythm while you are doing normal activity. These tests are not painful.

    How often should you check?

    • Near the time of diagnosis, or at least by 6 years old: The first EKG and echo should be done.
    • At least every other year until 10 years old: Have an electrocardiogram and echocardiogram or cardiac MRI.
    • At least every year after age 10: Have an electrocardiogram and echocardiogram or cardiac MRI.
    • If there are abnormal results: If you have an abnormal electrocardiogram or echocardiogram or cardiac MRI, the test should be repeated at least every six months. Your doctor should also consider starting heart medications, even if you do not have any symptoms of heart problems.
    • Before surgery: You should always have an electrocardiogram and echocardiogram or cardiac MRI repeated before surgery if you are having general anesthesia or had abnormal tests.

  • Consider using medication
    Medications are often started before any heart problems are seen, or they may be started when heart problems are seen on an echocardiogram or cardiac MRI, even if you have no symptoms of heart problems. Medicines that may help your heart include:

    • ACE-Inhibitors and Angiotensin receptor blockers make blood vessels open wider, which makes it easier for the heart to pump blood throughout the body.
    • Beta-blockers help the heart to relax, so it beats more slowly and efficiently.
    • Diuretics help the body remove extra water, so that there is less blood volume for the heart to pump.

    Let your doctor know if you think you may be having side effects from the heart medicine(s).

Related links

Understanding and Caring for the Heart (download)
Care Guidelines
PPMD's Cardiac Webinar Series
Dilated Cardiomyopathy in Muscular Dystrophy (download) 
Beneficial Effects of Beta-Blockers and ACE Inhibitors in Duchenne (download) 
Safety and Efficacy of Carvedilol Therapy (download) 
PPMD's Cardiac Initiative

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