Sabrina Cuddy • August 7, 2024
Are you newly diagnosed with HCM, or have your symptoms recently changed?

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 !

HCMA Blog

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By Gordon Fox June 9, 2025
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By Lisa Salberg June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
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