Sabrina Cuddy • May 31, 2023
LIVE-HCM: Lifestyle and Exercise

There is finally more clarity about exercise for HCM patients. Some doctors say, “Don’t do anything physical,” and others say, “Do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle.

A recent study of the exercise habits of over 1500 HCM patients has shed additional light on this important topic. You can hear about the research findings and recommendations for yourself.  Lisa Salberg, Dr. Rachel Lampert, and Dr. Sharlene Day discussed the study and its implications for HCM patients during a webinar on May 30th, which you watch now. 

Highlights of the study:

In summary, 1660 people enrolled, of which 42% exercised vigorously. The rest of the patients either exercised moderately or were less active. Less than 5% of the total group experienced one serious cardiac event (cardiac arrest, appropriate ICD shock, syncope, or death). 

Those exercising vigorously did not have a higher rate, with 4.7% of the vigorous group and 4.6% of the non-vigorous experiencing one of these events. 

Participants were, in general, seeing HCM experts while participating in the study.

If you are considering changing your exercise activities, touch base with your HCM care team.  You must work with experienced HCM doctors such as HCMA’s Recognized Centers of Excellence.

Fast Facts About Exercising When You Have HCM:

  • For most patients, HCM will not interfere too much with their lifestyle.
  • HCM patients should not lead a sedentary lifestyle.
    • Walking, bicycling, and lap swimming are generally acceptable forms of exercise. If swimming, be sure there is a lifeguard or have a buddy.
  • Those with symptoms should not overexert themselves.
    • Listen to your body and slow down or stop if your symptoms increase. 
  • When exercising, avoid being in extreme temperatures and stay hydrated.
  • If you want to join a gym, be familiar with the laws in your state.
    • Are gyms required to have automated external defibrillators (AEDs)?
  • Work with your HCM specialist to find the best activity level for you. 

If you have questions about talking with your doctor regarding an exercise routine, Linda or Sabrina can assist you. Don’t hesitate to contact the HCMA with any other questions regarding your exercise plan or the resources available.

HCMA Blog

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
An official seal in black & red with white letters that say HCMS Recognized Centers of Excellence

July's Topic is COE Care at the HCMA

By Sabrina Cuddy • July 3, 2025
Getting HCM care at a HCMA Recognized Center of Excellence has a positive impact on patient's outcomes. Find out why in the post by Health Educator Sabrina Cuddy

Pro Publica Releases Results of FDA Investigation

By Erica Friedman • June 26, 2025
Investigative journalists Debbie Cenziper, Megan Rose, Brandon Roberts and Irena Hwang from Pro Publica and NPR have concluded a 14-month long investigation into the quality of generic drugs coming into the United States from overseas. Among the many voices that spoke up for American patients was HCMA Founder and CEO, Lisa Salberg who has felt the effects of low-quality drugs personally. Salberg believes that fixing this problem is something we can do, even in this time, when even health care is highly politicized. Read the key takeaways from ProPublica’s 14-month investigation into the FDA’s oversight of foreign drugmakers in Threat in Your Medicine Cabinet: The FDA’s Gamble on America’s Drugs .
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