Outlook Positive for Most HCM Patients

According to an editorial published in yesterday’s issue of Circulation by Drs. Barry and Martin Maron together with Dr. Ethan Rowin, the outlook for most HCM patients is much rosier than previously thought.

According to current estimates, which take into account contemporary disease treatments and risk management strategies, the risk of death from HCM is only .5% per year or 2.5% over 5 years, which is similar to the degree of risk in the general non-HCM population.

Hence, according to the editorial, HCM patients should be reassured about their long term prognosis.

 

2 thoughts on “Outlook Positive for Most HCM Patients

  1. I think it’s hard for many of us in support groups who use these pages to really believe this. Alternatively, the symptoms suffered are being under estimated in terms of severity and/or impact on an even reasonable quality of life. Longevity comes second to quality of live or even the ability to live a restrictive life without pain or symptom free enough to allow some sense of tranquility.

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  2. Yvonne, to a degree I agree with your statement however we would have varied on our wording probably. I have known of my HCM for 17 years having also suffered rather challenging symptoms before and yes since. Having an extended septal myectomy afforded me to survive but did not change and can not change the degree of stiffness of a left ventricle that has not been enormously thick but very stiff. Also having microvascular syndrome adds more to it. Now getting back to the Maron’s statement, you must read and acknowledge the words like “most,” when used to describe HCM by them. I know for an absolute fact that they are both fully aware and sympathetic to what some of us face and the challenges we have through life. With that I believe there is no intention to underestimate our plight but they are referencing ” most” patients in their research and findings. I will agree on first read I felt a bit left out and maybe under appreciated a bit also regarding what life with HCM is like for me and others like me ….so I think you are probably one like me with your variety of HCM. Yvonne it is hard but we must agree we are likely not the ” most” patients whom they refer to. I am sorry any of us have to struggle and quality is very important for those like us and quantity of time vs quality is not as important when the struggles are day in and day out. I wish you well and hope that through ongoing research doctors like the Marons will continue to learn and be able to someday balance the field more and give the ones whom are not most of the patients a better quality of life.

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