Tag: patient

100,000 Views!!!!

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Today, HCMBeat.com surpassed 100,000 views!

 

Big thanks to everyone who has supported HCMBeat over the last 5 years, especially all of the doctors and researchers who spend their days working to improve the lives of patients with HCM.

 

I hope that this blog will continue to inform the HCM community about the latest news and information related to hypertrophic cardiomyopathy . 

 

The last few years have been exciting for HCM patients and the future looks even brighter!

 

Happy Mother’s Day to all.

 

Cynthia

 

Cynthia Burstein Waldman, HCM Patient, Founder and Editor, HCMBeat.com

When the Doctor Becomes a Patient

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Just about everyone involved with HCM has heard the name Dr. Barry J. Maron.  Dr. Maron has devoted his entire career to hypertrophic cardiomyopathy and has been perhaps the physician most associated with HCM, having gotten his start in the 1970s at the National Heart Institute.

In a brand new autobiographical essay by Dr. Maron, he retells his recent experience being diagnosed and treated for heart failure. 

When Dr. Maron experienced edema, difficulty lying flat, and trouble breathing, he rationalized it all away until he experienced a terrifying and life threatening episode, and even then, he decided to call an Uber to take him to the hospital instead of an ambulance! 

Once hospitalized, doctors were able to get to the root of his problem and treat Dr. Maron appropriately. Having received the proper care, he is now feeling much better.

Dr. Maron’s article concludes with three main takeaways:

  • Physicians should not diagnose themselves;
  • Heart failure is treatable; and
  • Listen to your cardiologist and live a healthy lifestyle!

AHA Seeking Patient Input for New HCM Initiative

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In November at the American Heart Association’s Scientific Sessions held in Philadelphia, AHA announced that it would be starting a three-year initiative focused on hypertrophic cardiomyopathy, also known as HCM.  The initiative is sponsored by MyoKardia, a San Francisco based company that is currently in clinical trials for mavacamten, the first drug specifically intended to treat HCM.

Last week, Cynthia Waldman of HCMBeat had the opportunity to speak with Amy Schmitz, AHA’s National Corporate Relations Director and Alexson Calahan, a Communication Manager for AHA.

What follows is a summary of their conversation about the forthcoming HCM initiative that has been edited for clarity.

Continue reading “AHA Seeking Patient Input for New HCM Initiative” →

Doctor with HCM Calls for Patient Access to Medical Device Data

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In an editorial entitled “It’s My Heart, Why Not My Data” by Dr. Ira Nash in the January 2, 2018 edition of Circulation, Nash calls for device manufactures to allow patients to access the data generated by their implantable devices.

Nash, a cardiologist who himself has hypertrophic cardiomyopathy, calls the paternalistic practice of limiting data access to physicians anachronistic in a world which has become more and more focused on empowering patients to make collaborative decisions with their physician.

Dr. Nash explains in a postscript to the article that after being denied patient access to the data generated by his implantable loop recorder, he was ultimately granted access to his data as a physician. Most of us don’t have that ability.  It would certainly be nice if patients were given the option to access their data simply because it is most important and relevant to them.  It is the patient’s life, after all, which is at stake.