← Return to HCM-ers: Introduce yourself or just say hi

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Profile picture for Linda, Volunteer Mentor @walkinggirl

@thehellyousay I see that both @jachrist and @emo44 have responded with such helpful information! Be sure to read https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 and learn all you can about this inherited condition which we've each had all of our lives whether we knew it or not. I was in my later 50's when a heart murmur was heard for the first time. I was diagnosed with HCM when it did not go away and further testing was done. We are all so different, mine progressed over the next 20 years to the point where I had a syncope at age 75 and then was VERY strongly advised to have a septal myectomy at age almost 76 in 2022. Some people have been able to be helped by ablation or by a drug such as Camzyos. There is no one-size-fits-all. Are you a patient of a cardiologist that is well versed in HCM or at a COE (Center of Excellence)? I am glad @emo44 suggested contacting the 4HCM.org (Hypertrophic Cardiomyopathy Association) via their website. (I am a Face of HCM - you can read my story by looking for Linda who has red hair and is standing on a ship). I am also glad that @jachrist strongly suggested that your blood relatives get checked out. Looking back, I know my dad had it, no official diagnosis but the SOB (shortness of breath) and fatigue were a part of his life from middle age onward, passed away from another medical problem. My son (49) gets an echo every 5 years, partially covered by insurance because a parent has HCM. My still-growing grandson (16) gets an echo every 2 years, grandson not covered by insurance, so they pay out of pocket. Many people have an MRI, I never had one until I was going through the 2 days of testing at Mayo before surgery, the echo "said it all." I hope you will inform us about how you are doing along this journey and ask questions. Most of all, know that many of us started with the same "HCM - never heard of it" as well as the fear/disbelief of the unknown. Yet here we are telling our tales!

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Replies to "@thehellyousay I see that both @jachrist and @emo44 have responded with such helpful information! Be sure..."

@walkinggirl

Glad that you also recommended blood relatives have an Echocardiogram. One in every 500 have HCM and if you have HCM or HOCM there is a 50/50 chance that your family members will get it as well. There are 6 brothers and sisters in my family and two of us have HCM/HOCM. My Daughter also has been tested and fortunately she was good but needs to test every 5 years.
Take Care
Jim