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Hypertrophic Cardiomyopathy and Young People, Like Ben Breedlove

Heart and hypertrophic cardiomyopathy

By now, the YouTube videos left behind by 18-year-old Ben Breedlove, who died on Christmas due to complications of hypertrophic cardiomyopathy (HCM), have been viewed by countless numbers of people around the world. This young man’s life was taken by a disease that is the most common cause of sudden death in young people (age 35 and younger).

What is hypertrophic cardiomyopathy?

Hypertrophic cardiomyopathy is a relatively uncommon heart disease that strikes males and females of any ethnic group about equally, although there is a slightly higher prevalence among blacks.

While you may not have heard of HCM before, it is more common than many other conditions that are more familiar, such as cystic fibrosis, which affects about 1 in 3,300 people. The Hypertrophic Cardiomyopathy Association reports that the condition affects 1 in 500 people in the general population, and there are an estimated 600,000 people in the United States with the disease.

Hypertrophic cardiomyopathy is a hereditary condition, caused by abnormalities in genes that produce a protein necessary for contraction of the heart. In most cases, the condition is inherited from a one parent who carries a defective gene. If a parent has the gene, there is a 50% chance his or her children will have HCM.

While the muscle fibers in a healthy heart have a normal thickness of less than 11 millimeters, the muscles in a heart affected by HCM become abnormally thick. The excessive muscle growth can begin even before a child is born, while the heart of the fetus is still developing.

Hypertrophic cardiomyopathy and athletes

Hypertrophic cardiomyopathy is the leading cause of sudden cardiac arrest in young athletes, including high school, college, and young professional players as well. One example is Gaines Adams, a defensive end for the Chicago Bears, who died at age 26 from HCM.

In two studies of high school and college age athletes who died suddenly—one involving 160 cases and the other involving 134 cases, each covering a period of 10 years—the main contributor to sudden death from cardiovascular causes during sports was HCM.

Symptoms of hypertrophic cardiomyopathy

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Symptoms can vary from person to person. Some people with the disease never experience any symptoms at all, and the first and only sign for them may be when they experience unexpected sudden death during or after physical exertion, as has been seen among young athletes.

Symptoms of HCM can include

  • Shortness of breath
  • Heart palpitations
  • Chest pain
  • Lightheadedness, passing out

Because the symptoms of hypertrophic cardiomyopathy are like those of many other heart conditions, clinicians need to conduct certain tests to identify the disease. Among them are:

  • Electrocardiogram (ECG), which can show an abnormal electrical signal associated with a thickening of the heart muscle
  • Echocardiogram (heart ultrasound), which allows the thickness of the heart muscle to be measured. When used with Doppler, ultrasound can show an image of the blood flow in the heart and measure contractions and the filling of the heart
  • Cardiac catheterization, in which a cardiologist inserts a catheter into an artery in the groin, arm, or neck and guides it to the heart (using X-ray imaging)

How is hypertrophic cardiomyopathy treated?

Various medications, such as beta-blockers (e.g., atenolol, metoprolol, propranolol), calcium antagonists (e.g., diltiazem, verapamil), and anti-arrhythmic drugs (e.g., amiodarone, disopyramide) can be administered to relieve symptoms.

Other treatment options include surgical myectomy (removal of thickened muscle) or implantation of a pacemaker or implantable cardioverter defibrillator.

Currently there is no cure for HCM.

For some people who have been diagnosed with hypertrophic cardiomyopathy, like Ben Breedlove, the disease severely restricts their lifestyle and can ultimately lead to an early death. For others, the disease is not as severe and they can live a fairly normal life.

Ben Breedlove and his silent videos about his struggle with hypertrophic cardiomyopathy are a loud testament to the seriousness of the disease. Perhaps with greater awareness, more young people will escape the fate that befell this young man.

Hypertrophic Cardiomyopathy Association
Maron BJ et al. JAMA 1996 Jul 17; 276(3): 199-204
Van Camp SP et al. Medicine and Science in Sports and Exercise 1995 May; 27(5): 641-47

Updated 4/21/2014



Breedlove's videos were heart wrenching. There are so many treatments. I do wonder about his chances for transplant, given his young age. Nowhere have I read that he had a defibrillator or other device.
In one of Ben's videos he says that in I think 2009 he had surgery for a pacemaker/defibrillator.
Okay, thanks. That makes sense, of course.