Author: hcmbeat

Sci-Fi or Reality? ICDs Using Light

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Could your next implantable defibrillator use a light beam instead of electricity to restore a normal heart rhythm?  According to a recent study, this might just become reality some day.

A recent study published in the Journal of Clinical Investigation was able to use optogenetics — which involves embedding light-sensitive proteins in living tissue — to terminate ventricular arrhythmias in the hearts of mice.  Scientists at Johns Hopkins then created a computer simulation of the human heart to figure out if this technology could work on humans as well.

Check out this video for interviews with the researchers and further explanations of the study.  Though still highly experimental, this could be the technology of the future.

Stay tuned……

What Are the First Signs of HCM?

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A study published today by Dr. Carolyn Ho, of Boston’s Brigham and Women’s Hospital, and colleagues, including Australia’s Christopher Semsarian, found that there are several factors which appear to stand out in young people who later go on to develop HCM.

The children/adolescents/young adults who participated in the study all carried at least one gene associated with HCM, and were members of families with strong histories of HCM. None of the 38 young people had clinical manifestations of HCM at the beginning of the study period, while 4 went on to develop HCM by the end of the study.  In collecting the data analyzed in the study, the test results of the 4 individuals with HCM were compared to the 34 individuals that did not have HCM at the end of the study.

The factors associated with the development of overt HCM, as identified by the researchers, were: abnormal left ventricular relaxation and higher ejection fraction, EKG changes, longer mitral valve leaflets, higher NT-proBNP concentrations and troponin values.

In the conclusion, the authors acknowledged the need for further research and investigation in order to better understand the natural course and evolution of the disease.

Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste

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I have had the joy of being a Registered Nurse for over 40 years. I was born wanting to be a nurse and started bandaging teddy bears at the age of three. By the age of 5, I was creating “medicines” by spinning blades of grass mixed with clover flowers in the front wheel well of an upside down tricycle.

As I got older, I moved on to be a Candy Striper and a Nurse’s Aide, and then I went on to get my degree as a RN, a BSN, and MSN and became a teacher, administrator, and researcher. All of this cannot REALLY prepare you for; “Being on the other side of the bed” which is what happens when a health care professional who is used to caring for patients becomes a patient themselves. Continue reading “Guest Blogger – Surgical Myectomy: A Twice in a Lifetime Experience – By Jill Celeste” →

Drug for Non-Obstructive HCM Moves Along

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Heart Metabolics announced today that its drug, Perhexiline, has moved into Phase 2b trials. The drug is intended for those patients with HCM and moderate to severe heart failure with preserved left ventricular function. Results of the Phase 2a study found the drug improved exercise capacity and quality of life in patients taking the drug.

To learn more about the staging of clinical drug trials and how they work, click here.

Exercise Does Not Trigger Most HCM Deaths

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According to research presented at the 2016 European Society of Cardiology Congress today, sudden cardiac arrest from HCM, which has long been thought to result from exercise, is actually more likely to occur at rest, or even during sleep, according to Dr. Gherardo Finocchiaro, a cardiologist at St George’s University in London.  Dr. Finocchiaro also pointed out that of the 184 HCM patients in his study, almost 80% had no previous symptoms of HCM, and only 1 in 5 had been diagnosed with HCM before their deaths.  Interestingly, most of the sudden deaths from HCM analyzed in the study occurred in patients in their 30s and 40s.

New Model for Predicting SCA?

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Doctors at the University of Pennsylvania have created a new model which they say can predict the risk of sudden cardiac arrest in people without known heart disease.   According to the article, published recently in Circulation, low levels of albumin, a protein commonly tested in routine blood panels, is a novel risk factor among the twelve factors identified.  This article in Cardiac Rhythm News offers more details.

Ten Years After Myectomy

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On August 11, 2016, I celebrated the ten year anniversary of the myectomy I had at Mayo Clinic in Rochester, MN.  To commemorate the auspicious occasion, for the first time in many years, I wrote a blog entry on my old blog, Cynthia’s Summer Adventure.  I created Cynthia’s Summer Adventure so that my friends and family could follow my progress during surgery and also, so that other HCM patients would have an opportunity to see what it was like to go through the myectomy process at Mayo Clinic.

This week I opened my mail, and between the many envelopes containing bills and the ever present promotional leaflets from local realtors, I found a large envelope from Mayo Clinic.  This envelope contained a survey for me to fill out with a bunch of questions about my heart condition.  All of the questions in the survey are specifically targeted at patients with Hypertrophic Cardiomyopathy.  The survey asked me how I am feeling now, what medications I am currently taking and whether I have had other cardiac complications or procedures in the ten years following my myectomy surgery.

Ten years after I had my open heart surgery, I am so glad that I chose Mayo so that I am able to participate in and benefit from all of the meaningful research they are doing on the condition.  This research will continue to benefit my descendants and relatives in the hope that some day, HCM will no longer be part of our lexicon.

The Olympic Athlete and the Risk of Sudden Cardiac Death: Lisa Yu on Huffington Post

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Lisa Yu, founder of Children’s Cardiomyopathy Foundation, posted this article today on Huffington Post.  This piece summarizes the efforts currently being made to screen Olympic athletes and elaborates on how better screening and response protocols might help to avoid tragedies.

Better Screening and Treatment Necessary for Atrial Fibrillation

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An August 20, 2016 article in The Lancet points out that many physicians do not effectively screen for or properly treat Atrial Fibrillation. Furthermore, aspirin, which is often given as a treatment for A-fib, is insufficient to prevent stroke.

If A-Fib is detected, treatment with anti-coagulants is essential.

Lack of Diversity in Gene Samples May Cause False HCM Diagnosis

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A recent study published in The New England Journal of Medicine concluded that individuals of African descent found to carry genes previously identified with HCM did not, in fact, have the disease.  Thus, the article highlighted the importance of including diverse populations when sequencing genomes for genetic diseases so as to avoid false diagnoses.

The New York Times also picked up this story, focusing its article on the negative repercussions that can result from a false positive genetic test for HCM.

In connection with the findings, National Public Radio interviewed three people, including Dr. Isaac Kohane, one of the researchers who published the findings of the lack of diversity in the HCM genetic panel, as well as New York City HCM patient Tarika Mingo.  Finally, NPR spoke to veteran HCM expert Dr. Barry Maron, who noted a potential concern that athletes may have been erroneously disqualified from sports participation solely on the basis of false positive genetic testing results.

See also this story in the Wall Street Journal.