Tag: hypertrophic cardiomyopathy

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.

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.

Do Elite Athletes Provide Clues About HCM?

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During the Olympics we all gather around our television sets to watch the best athletes in the world compete against each other and we wonder how it is that they can humanly perform at such a high level?

This feature story about Stanford HCM Clinic’s Dr. Euan Ashley provides us with an interesting overview of the research Dr. Ashley is doing on high performance elite athletes with the hope that their genes may provide clues that will one day help to help treat those of us with HCM and other genetic heart conditions.

Many HCM Patients Physically Inactive

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According to a recent study of HCM patients, more than half of the patients surveyed did not participate in adequate physical activity due to complaints of pain, injury and disability.

The takeaway from this study is that for those with HCM, physical activity should be encouraged to the extent possible for each patient.

For more on exercise, see the AHA Guidelines for exercise on the Hypertrophic Cardiomyopathy – HCM For Short page of this website and the HCM exercise program developed by Toronto’s Peter Munk Cardiac Centre listed at bottom of the Resources  page of this website.

 

Unsuspected AFib Detected in HCM Patients

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A recent retrospective study published in the Journal of Cardiovascular Electrophysiology found that atrial fibrillation (AF) occurred for the first time in 16 of 30 patients (53%) of patients with implantable devices being followed at the center conducting the study.

Of the patients experiencing AF for the first time, 14 of 16 (88%) of the patients were not aware of having experienced any clinical symptoms.  As patients age, AF appears to be a common consequence of HCM.  Patients may be caught unaware and unprepared, so monitoring is especially important.

HCM Drug Trial Advances to Next Round

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MyoKardia, a San Francisco based bio-phamaceutical company developing drugs specifically for HCM and other genetic cardiomyopathies, announced data from their Stage 1 trials showing that the drug,  MYK-461, benefits patients with HCM.

Specifically they found that the drug reduced ejection fractions and left ventricular outflow tract gradients in certain of the 101 individuals who participated in their Phase 1 trials.

The next step for the drug is to try to duplicate these findings in Phase 2 trials which will commence later this year.

HCM May Develop Later in Life

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A recent study followed 14 patients carrying one of two known genes associated with HCM (MYBPC3 and MYH7) over a 10+ year period .  At the time  of gene identification, none of the patients shown clinical evidence of hypertrophy.  Over the time span of the study, 3 patients, who were then adults, had developed signs of HCM.  Hence, the study suggests that periodic screenings are necessary for gene positive individuals throughout adulthood.

According to Cardiomyopathy U.K., the researchers undertook this project due to the lack of information and guidelines available to patients who are gene positive but have no outward signs of the disease.

Severe Pediatric Cardiomyopathy Causing Gene Identified

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A recent article in Science Daily discussed findings of geneticists in the Netherlands which revealed the existence of  a mutation in the gene alpha-kinase 3 (ALPK3) which, if inherited from both parents, may cause severe cardiomyopathy in children.

Cardiomyopathy U.K. recently featured this story on their website.

See here for study.

 

 

Alternative to Myectomy?

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Could this minimally invasive procedure prove to be a viable alternative to septal myectomy or alcohol ablation for septal reduction?

Doctors at Minneapolis Heart Institute are planning a larger, multi-center trial to test the viability of this procedure as a larger scale treatment for HCM.