Sabrina Cuddy • January 26, 2024
February is Heart Month

Here are some HCM basics that everyone should know:

  • On average, we live as long as anyone else when we properly care for our HCM. 
  • We are more likely to get good care at a high-volume center – an HCMA-Recognized  Center of Excellence. The American College of Cardiologists and the American Heart Association guidelines for HCM agree about high-volume centers.
  • Most people have a few symptoms that are easily managed with medications. 
  • If you are a member of the HCMA Facebook Group, remember that those of us who seek support from the group often have more problems related to HCM. If you are newly diagnosed, you may be alarmed by what some are going through. Just know that your HCM may not be as dire as some accounts you read online. 
  • HCM is characterized by a thickening of the heart muscle (hypertrophy means “to thicken”). Even with minimal thickening, though, we can have symptoms due to heart muscle stiffness and other factors caused by myocardial disarray , which means the heart muscle cells aren’t lined up normally.  

Some HCM statistics

About 50% of adults with HCM present with symptoms. You can be diagnosed with HCM at any age. It’s common to be diagnosed during the teenage years, but the average age of diagnosis in the HCMA database is 39 years.  https://4hcm.org/hcm-development/  

70% of those with diagnosed HCM are obstructed (called HOCM); for more info, please see the  obstruction  page on our website.

25% of people with HCM will experience  atrial fibrillation , a serious arrhythmia. 

25% of people with HCM would benefit from ICD therapy to protect them from sudden cardiac arrest (SCA). Risk stratification for SCA can help you and your doctors decide if you need an ICD and what kind is best for you.  Traditional Transvenous ICD  –  Subcutaneous ICD Fewer than 5% of those with HCM will eventually need a  heart transplant.

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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