Though HCM does not generally fall under the SADS umbrella, these findings are equally concerning for HCM families.
SADS conditions generally include:
For more information on these conditions, visit the SADS Foundation.
EpiCor Therapeutics, a Irish biotech start-up, is investigating whether 5-azacytidine, a drug previously used to treat bone marrow disorders, may reverse the hypertrophy of HCM. According to the researchers, the drug targets the mechanisms that drive the abnormal thickening of the heart muscle by inhibiting DNA methylation, thereby reducing the growth of cardiac cells.
EpiCor’s work with 5-azacytidine was declared the overall winner of the 2016 Venture Launch Accelerator Programme at Ireland’s University College Dublin where it won the 2016 Start-Up of the Year Award.
The U.S. Food and Drug Administration today issued a safety advisory regarding St. Jude Medical implantable cardiac devices used in conjunction with St. Jude’s proprietary Merlin @home Transmitter.
According to the advisory, these devices could potentially be vulnerable to hacking. However, only a highly skilled hacker would be sophisticated enough to exploit the vulnerability. Such unwarranted interference could conceivably cause premature battery depletion or unnecessary shocks.
A software patch has been developed for the Merlin @home monitor designed to address the issue and to reduce the risk of hacking. The update is now available and will be applied automatically to the Merlin monitor.
***Patients only need to make sure their Merlin@home Transmitter remains plugged in and connected in order to receive the software patch.***
Short-selling firm Muddy Waters first went public with this information in August, believing that it might cause a pending $25 billion acquisition of St. Jude Medical by Abbott Laboratories to fall apart. However, the deal closed last week despite the issue.
See also:
This article in the Minneapolis Star Tribune.
There are distinct stages of HCM and treatments will vary according to the stage. Therefore, it is important, according to a recent article in the Netherlands Heart Journal, for patients to seek treatment from teams experienced in the the treatment of HCM. These professionals are able to recognize transitions in the course of the disease as they occur, and then implement necessary changes in treatment.
In this thorough overview of HCM and its treatment, Dr. Iacopo Olivotto and his colleagues in the Netherlands observe that HCM is seen infrequently by community cardiologists (as compared to more common heart conditions like coronary artery disease). Hence, one of the major difficulties in HCM practice has been identification of patients at highest risk.
Continue reading “One Size Does NOT Fit All: Treatments Differ by Stage in HCM”
MyoKardia’s experimental drug MYK-461, currently in Stage 2 trials for humans, has now been shown to eliminate left ventricular obstruction in five cats with HCM. It has already been shown to inhibit traits of HCM in mice.
Addressing these findings, Associate Professor Joshua Stern, chief of the Cardiology Service at the University of California, Davis, veterinary hospital, stated:
Based on these positive results, U.C.Davis is hoping to conduct a clinical trial of MYK-461 to determine whether it could become the standard of care for cats with HCM.
The full text of the article published in Plos One can be found here.
It appears to be the end of the road for the Gilead drug eleclazine, a late sodium channel inhibitor previously known as GS-6615. Eleclazine, with properties similar to the anti-angina drug ranolazine (which was approved by the FDA in 2006), was the subject of a recently terminated HCM clinical trial known as Liberty-HCM. The HCM eleclazine study focused on whether the drug would improve symptoms and exercise capacity in patients with HCM by increasing their peak oxygen uptake, resulting in improved VO2 max readings on exercise testing. The HCM study began enrolling patients in February 2015. Data collection had been scheduled to continue through June 2017. Continue reading “End of the Road for Eleclazine and Liberty HCM Study”
This highly informative blog article from Carolyn Thomas of Heart Sisters , while targeted toward people with coronary artery disease, contains much useful information which can be applied to heart patients with other conditions as well. This particular article offers many useful suggestions of ways to help combat depression which could just as easily be implemented by those with HCM.
An added bonus is that most of these suggestions do not involve ingesting anything at all!
One caveat she mentions, which bears repeating, is that you should ALWAYS discuss any type of dietary supplement with your cardiologist before you begin taking it.
This informative blog article about genetic testing features practical advice about genetic testing and is taken from answers provided in a live presentation by Drs. John Jefferies and Ivan Wilmot.
Issues addressed include: how the test is administered, insurance issues related to the test and the meaning of a positive genetic test.
A study published yesterday in the Journal of the American College of Cardiology demonstrated the usefulness of computer algorithms in distinguishing hearts with HCM from athlete’s hearts on echocardiogram. The computer algorithms were able to automatically classify the echocardiographic images by distinguishing between changes seen in hypertrophic cardiomyopathy and changes seen in athletes’ hearts due to athletic conditioning.
Dr. Partho P. Sengupta, who authored the study, said that this technology may prove to be a useful tool in recognizing and diagnosing HCM for those who lack the experience to distinguish these conditions on echocardiogram.
Good stories usually have a protagonist who is confronted with a challenge or conflict. The story then follows the protagonist’s journey to overcome that challenge. Often, there are one or more attempts at conflict resolution which prove unsuccessful, or that even make things worse before the path to success is revealed. In the end, the best stories are those where that successful path was right in front of the protagonist the entire time.
The Challenge for HCM Patients: Local Cardiologist vs. Center of Excellence
For a good story related to the world of hypertrophic cardiomyopathy, you need look no further than Jill Celeste’s HCMBeat blog post entitled “Myectomy: A Twice in a Lifetime Experience.” The protagonist in this story is obviously Jill. The conflict is the impact of her HCM symptoms on her quality of life. Her journey included unsuccessful forays into different therapies before finally, Jill arrived at the resolution of her conflict by seeking care at a medical center with dedicated expertise in the treatment of HCM.
In the sake of full disclosure, that center happens to be Mayo Clinic where I work. Jill’s great storytelling reminded me how some really clever books and movies tell the same story from a different point of view. In this blog post, I would like to give you my point of view as a physician who directs a HCM specialty center of the best way that you can navigate your own HCM. I will share how care by a “center of excellence” can fit into the bigger picture of your HCM care and give you some suggestions for ways to balance so you can work well with both your local care team as well as a specialty center that may be a long way from your home. Continue reading “Guest Blogger – The View from a HCM Center – by Dr. Steve Ommen of Mayo Clinic’s HCM Center”
HCM Beat 