Olivia Esposito • July 26, 2023
Are you newly diagnosed with HCM, or have your symptoms recently changed?

It may feel overwhelming to learn about this new diagnosis or figure out how to “adjust the sails” to manage your HCM if things are changing. The HCMA is here for you – you are not alone! Besides the information in this newsletter and on our website, you can contact us for an Intake and Navigation Call or, if you have already spoken with us, an Update Call. Either way, sign up with Intake first and let us know if you need a new intake or an update:  https://4hcm.org/education-and-support/. If you are outside the US, you can request a Zoom call to save on long-distance call costs.

I have HCM; now what?

Breathe! 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 – a Center of Excellence. The American College of Cardiologists and the American Heart Association guidelines for HCM agree about high-volume centers.

HCM is characterized by thickening of the heart muscle (hypertrophy means “a thickening of muscle fibers”). Even with minimal thickening, though, we can have symptoms due to stiffness of the heart muscle and other factors caused by myocardial disarray, which means that the heart muscle cells aren’t lined up normally.  For more information, follow this link:   https://4hcm.org/newly-diagnosed.

You can find great support in our  Discussion Groups  and on Facebook. Remember that those of us seeking support from the  Facebook group  are most often those with more problems related to HCM. If you are newly diagnosed, you can learn a lot from the group, but you may be alarmed by what some of us are going through. Just know that your HCM may not be as dire as some of the accounts you read online. Most people have a few symptoms that are easily managed with medications. The group is private, and you will find excellent peer support if you become a member.

You may develop new symptoms over time – don’t panic!

HCM symptoms can stay the same for a patient’s lifetime, but for many of us, things change. Some will develop an  arrhythmia  – an irregular heart rhythm that may be concerning or may just be annoying. Obstruction can increase over time, causing new symptoms or more intense symptoms. For these reasons, it is vital to be followed regularly by your HCM specialist. You might need a change of medications or other treatment to improve your quality of life. The HCMA can help you understand your latest test results, organize your thoughts so you know what to ask your doctor, or help you find a new team to manage your care. We are here for you, so don’t hesitate to  contact us !

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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