Marque Ann Barton, living with hypertrophic cardiomyopathy (HCM)
- When she was 33, she received an Implantable Cardioverter Defibrillator (ICD) after being diagnosed with Hypertrophic Cardiomyopathy or HCM.
- It’s the kind of problem we hear about when athletes suffer sudden heart attacks.
- If she were to have a sudden unpredictable, life-threatening arrhythmia, that device would recognize it within a few seconds, and then it would either pace her back to a normal rhythm or deliver electric shock to shock her back to a normal rhythm. And it would be a minor event instead of what it would most likely be a catastrophic event.
- She has a remote monitoring device at home that tells doctors about her heart rate and her heart rhythm, and if she is having abnormal rhythms in the upper or lower chambers of the heart. This device basically treats the fast abnormal rhythms in the lower chambers of the heart. They can help us detect and diagnose other types of rhythms.
- She had her triplets genetically tested as kids and the test confirmed that they all have the genetic marker.
- When she was diagnosed, she did her research on HCM and discovered that the HCMA evaluates and approves either doctors, hospitals, or clinics to be considered a Center of Excellence.
- Her mission was to find a doctor that's affiliated with the Center of Excellence, and she found one at The University of Kansas Health System.
- As a patient, she has learned that you must be your own best advocate. She adds that knowledge is truly power.
Dr. Loren Berenbom, electrophysiologist and cardiologist, The University of Kansas Health System
- The most classic kind of HCM, is the what's called the basal septum, which is the part of the heart between the two lower chambers, the right ventricle, and the left ventricle.
- When that part thickens, that can lead to obstruction of flow out of the heart. The heart gets in its own way as it contracts and tries to pump blood. Blood can't get out and normally that puts the heart under increased stress.
- As our diagnostic tools have gotten better, and our understanding of the disease has gotten better, it's not nearly as dangerous of a disease as we thought a few decades ago. And that is because we have better treatments for the disease.
- I would say at this point, most people with HCM are going to live a long life and die of something else.
- We also use genetic testing. Now, there are 30-40 percent of people who have HCM who don't have an abnormal gene that we have found.
- But about two thirds of families would get a positive genetic result. And that's very helpful because that allows us to then do further genetic testing on other family members.
- We've identified certain risk factors within the HCM population that puts you at increased risk for sudden cardiac death. And one of those is a family history of sudden cardiac death. And that means that your risk of an event is in the 2-3 percent per year range.
- We have an excellent center for all different kinds of heart disease, and we have a nationally recognized Center of Excellence for hypertrophic cardiomyopathy care.
- The average cardiologist sees 3-5 patients with HCM each year, but our doctors typically see hundreds of HCM patients each year, so we’re much more attuned to what is going on.
- Our ability to treat HCM patients has improved dramatically in the last two years and over the course of my career.
- An educational webinar is available at www.4HCM.org.
Friday, March 15 at 8 a.m. on Morning Medical Update: Doctors say more younger and middle-aged people are suffering strokes worldwide and it’s having a global impact. We
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