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

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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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