A recent paper published in the journal Circulation looked at the clinical course of approximately 4,600 HCM patients over the course of more than 24,000 clinical years, which the paper describes as the largest comprehensive cohort of HCM patients ever studied.
This study examined patients from eight high volume HCM centers which aggregated their institutional data into a database known as the Sarcomere Human Cardiomyopathy Registry (or the acronym the “SHaRe” for short). The results of the study showed that, in general, HCM patients are at substantially elevated risk for atrial fibrillation and heart failure, and have significantly higher mortality rates than that of the general U.S. population.
Continue reading “HCM Researchers Put their Heads Together to Improve Lives of HCM Patients”
A recent paper by doctors at Tufts University’s HCM Center found that transient episodes of atrial fibrillation (AF) are treatable and do not often progress to permanent AF.
This study found that AF was not a frequent cause of death by heart failure or sudden cardiac arrest. However, the researchers identified AF as an important cause of stroke in HCM patients. Therefore, they recommend a low threshold for starting HCM patients on anti-coagulants following an initial AF episode.
Researchers in this study analyzed statistics from 1558 HCM patients, 20% of whom experienced AF. 74% experienced only sporadic episodes, while 26% went on to develop permanent AF.
At the time of publication, 91% of the 277 of the patients included in the sample were still alive and between the ages 49 and 75 years old.
According to an accompanying editorial by Italian HCM expert Dr. Paolo Spirito, the outlook for HCM patients with atrial fibrillation has improved over the last twenty years due to significant advances in HCM treatment over that time period such as ICD implantation and myectomy, along with aggressive anti-coagulation for atrial fibrillation patients.
Spirito also noted that it is difficult to predict whether a given HCM patient will go on to develop permanent Afib after a single episode since many will not. Additionally, permanent afib can be well tolerated when there is contemporaneous control of heart rate. Therefore, anti-arrhythmic medications, which can cause unpleasant side effects, may not be necessary for HCM patients with afib as long as anti-coagulation measures are taken.
It’s strange to think that a chaotic arrhythmia in the heart might actually appear to be a seizure caused by something that has gone haywire in the brain, but with sudden cardiac arrest (SCA) this can sometimes happen.
This is the true story of what happened to my daughter.
Continue reading “Guest Blogger – When a Seizure is not a Seizure – by Wendy Borsari”
A recent retrospective study of patients at Minneapolis Heart Institute and Tufts Medical Center published in the Journal of the American College of Cardiology found that HCM patients who also had left ventricular apical aneurysms were at increased risk of sudden cardiac death and stroke. However, with increased surveillance and appropriate treatment, including the implantation of a implantable defibrillator, radiofrequency ablation and/or anti-coagulation, as appropriate, the authors suggest that the increased risk can be neutralized.
A summary of this article can be found here.
Pippa Middleton, who came to the public’s attention during the wedding of her sister Katherine to Prince William, has recently dedicated her efforts toward raising money for HCM genetic testing and research. Middleton’s efforts are in honor of her late friend Miles Frost, who was lost to sudden cardiac arrest due to HCM in 2015. Frost’s father, British journalist and media personality David Frost, died from HCM just two years earlier in 2013, but this information was never communicated to the family.
The Miles Frost Fund, a partnership with the British Heart Foundation , helps families who have lost a member to a sudden death obtain genetic testing in order to learn if other family members are similarly affected. The Frost Fund also funds research by U.K.researchers working towards finding a cure for HCM.
This article, published in this week’s Women’s Health magazine, features the former ballerina and beauty queen turned vocal patient activist. These days, Lindsay has focused her efforts on saving lives from sudden cardiac arrest. Lindsay’s efforts in the state of Ohio have resulted in proposed legislation to identify student athletes at risk of sudden cardiac arrest, while her partnership with the American Heart Association is steadily making CPR and AED training a graduation requirement in high schools across the nation.
Watch for more life-saving advocacy from Lindsay in the future. She is clearly much more than another pretty face!
Updated to include a video of Lindsay discussing her implantation with a S-ICD device.
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.