Serving the HCM Spectrum Disorder Community Since 1996

Friday, January 8, 2016

Section: Research

Dear HCMA Members and Supporters:
We are writing to let you know about an exciting new study called Lifestyle and Exercise in Hypertrophic Cardiomyopathy, "Live HCM"whose goal is to determine how lifestyle and exercise impact the well-being of individuals with HCM. This study is funded by the National Institutes of Health.
Currently, it is recommended that individuals with HCM avoid most vigorous sports, based on possible links between vigorous competitive sports and sudden cardiac arrest. However, the risks and benefits of mild, moderate, or vigorous exercise for HCM patients remain unknown.  LIVE-HCM  is looking to obtain information on how exercise and other lifestyle choices affect the well-being of people living with HCM  throughout the lifespan, from children to adults.   We're enclosing a brochure with more information about  LIVE-HCM.

LIVE-HCM is currently enrolling individuals, age 8 to 60 years old, both exercisers and non-exercisers. People with or without an ICD can participate.  Participation involves a telephone interview and filling out questionnaires online or on the phone. Since all information is gathered by phone, fax, and/or internet, there are no geographic limitations to participation. It's a three year study, with another brief questionnaire every six months.  Participants also receive a Fitbit-type pedometer, to wear a few weeks per year, which is yours to keep.  All information is kept strictly confidential. You can be participating in other studies and also participate in this one.
Whether you like to run, walk, play baseball, or sit and read a book, you can participate in this study and help us learn more about lifestyle choices and HCM.
For more information, please call the  LIVE-HCM coordinating center at 866-207-9813 or email us at live.hcm@yale.edu or look for us on the web at www.livehcm.org.
Lisa Salberg - HCMA Founder/CEO and Co-Principle Investigator -LIVE-HCM
Rachel Lampert, MD - Yale Co-Principle Investigators LIVE-HCM
Michael Ackerman MD, Mayo Clinic Co-Principle Investigators LIVE-HCM
Sharlene Day MD, University of Michigan- Co-Principle Investigators LIVE-HCM
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Comments (18)
Bob Putnam
10/15/2016 5:22:33 PM
I have been diagnosed with both HCM and Neuropathy recently. My symptoms seem to only be weakness in climbing hills during walking or cycling. I cycle about 35 miles 3x /week. I surely would like to know if that is too much exercise or not enough and whether there are any studies associated with someone my age which is nearing 77.

10/15/2016 5:15:38 PM
I have just been diagnosed with HCM and Neuropathy in my feet and legs. am a cyclist doing about 35 miles 3 times a week. My symptoms seem to be associated with climbing moderate 4-6
% hills but HCM may have similar symptoms. I would like to enter a study also but my age is 76.

Larry Weaver
10/14/2016 11:01:11 PM
I am also a 69 year old male who was diagnosed w/ HCM in 2006 and had a sudden cardiac arrest in 2011 and had an ICD implanted. I work out with a trainer 3 times a week and golf twice a week.

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