We understand that having a new diagnosis or changes in your condition can be daunting, but please know you’re not alone. The HCMA is here to support you every step of the way! In addition to the helpful info in this newsletter and on our website, we encourage you to contact us for an Intake and Navigation Call or a short Update Call if you’ve done Intake before. To get started, sign up at  https://4hcm.org/education-and-support/  or by calling +1 973-983-7429. Those outside the US can request a Zoom call to save on long-distance call costs.

I have HCM; now what?

First, take a deep breath. With proper care, people with HCM can expect to live as long as anyone else. It’s important to seek care at a high-volume center – a  Center of Excellence. The American College of Cardiologists and American Heart Association guidelines for HCM 2024 agree with the HCMA about finding the best care at high-volume centers.

HCM is characterized by thickening of the heart muscle. Even with minimal thickening, 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.  For more information, follow this link:   https://4hcm.org/newly-diagnosed.

You can find great support in our  Discussion Groups  and on Facebook. It’s important to remember that individuals seeking support on the  Facebook group  often have more severe problems related to HCM. You can gain valuable insights from the group if you have a new diagnosis. Remember that your HCM experience may not be as severe as some of the accounts you read online. Most people have a few symptoms that medications can easily control. The group is a private space where you can find exceptional peer support.

You may develop new symptoms as time passes – but please don’t panic!
While HCM symptoms can remain stable throughout a patient’s lifetime, many individuals experience changes. Some may develop an arrhythmia, while others may have an increase in obstruction, leading to new or more intense symptoms. For these reasons, it’s 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 !

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