Recently, I was diagnosed with Dilated Cardiomyopathy. I’d never heard of this condition, so decided to do some research. Cardiomyopathy, it turns out, is a disease of the heart muscle, and most people don’t know that they have it until they have symptoms or are tested by having an echocardiogram. I learned there are four main types of cardiomyopathy and that it affects people of all ages. The four main types of cardiomyopathy are dilated cardiomyopathy, hypertrophic cardiomyopathy, restrictive cardiomyopathy, and arrhythmogenic right ventricular dysplasia. Hypertrophic cardiomyopathy (HCM) and dilated cardiomyopathy run in families and are the result of an abnormal gene that is passed on. For example, if you have one parent with HCM you and your siblings have a 50% chance of inheriting the gene that causes it. But sometimes the first indication that a person has this condition is a cardiac event, as cardiomyopathy can cause arrhythmias, (irregular heartbeats) during strenuous exercise, and is one of the most common causes of sudden cardiac death (SCD) in young athletes, most often caused by hypertrophic cardiomyopathy.

Throughout my life I have always felt palpitations and had trouble walking or biking up hills. I had this checked out many times and was told it was nothing. But in 2001 I had an EKG done. It showed an abnormality, so I was sent for further testing. I was told my heart was enlarged and they asked if I was a heavy drinker, which I wasn’t. It turns out there is a type of cardiomyopathy that is alcohol induced. So I was told it was nothing to worry about, and I just went on with my life.

From 2001 to 2008 I had a number of EKG?s. Most came back showing the abnormality, but nothing further was done. In 2008 I noticed a definite difference in my ability to walk up a hill. My husband and I camp every year, but that year I struggled to ride my bike up a hill that I had the year before, so I made a doctor’s appointment. My EKG came back with a left bunch branch blockage, and I was referred to a cardiologist. It was seven years later, and I had totally forgotten about the incident in 2001.

The cardiologist did extensive testing and I was diagnosed with Dilated Cardiomyopathy, which is a weak and enlarged heart. He asked about my family history, but both my parents had already passed away from heart disease and I was unaware of what their exact diagnoses were. The cardiologist said that I most likely had inherited this condition?probably had it for years. He suggested that my family members be tested as well. I was put on large doses of blood pressure meds to slow down my heart rate. At the time of diagnoses my heart was functioning at 55%. It is now functioning at 40%.

Perhaps if I had been put on treatment sooner, my heart wouldn’t be functioning at such a low level now. Since my diagnosis some of my family members have been screened and so far no one has this condition. My siblings and I do agree that my father’s family most likely carried the gene as they all suffered from heart disease. I wrote this article to bring cardiomyopathy to the forefront, and encourage people to get tested if they have any of the symptoms described below.

Symptoms of cardiomyopathy may include:
– chest pain,
– light-headedness while exercising,
– palpitations,
– shortness of breath,
– dizziness.

Sometimes the initial symptoms do not show up until the individual collapses or suddenly dies during strenuous exercise. If a close relative has cardiomyopathy, you need to be tested. The most successful way to detect cardiomyopathy is with an echocardiogram, as it shows the thickening of the heart wall and/or enlargement of the heart. The cause of the thickening of the heart wall and enlargement of the heart must be determined so treatment can begin as soon as possible.

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Barbara Godin is a graduate of AU and writes the “Dear Barb” column. She lives in London, Ontario with her husband, two dogs, and one cat.