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Miss AJH Find out more about Miss AJH
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  • MYBPC3 Gene

    I am not sure where to start but I have been diag with HCM and PPCM. I also have had CHF 2 times, once 17 years ago and then again in 2018 (Currently 44). I had a EF of 10% and have recovered the second time to an EF of 46% (according to a heart MRI). However the MRI did NOT should any thickness associated with HCM. I do however have the MYBPC3 gene, and my sister also was diag with HCM 20+ years ago and needed a transplant. My MRI however did show 2 spots of what the cardiologist says looks like " Scar Tissue". He said the only disease that cause that are not located in America nor in Caucasians. I am Caucasian and have never left America. They are stumped. I am doing well but am wondering if HCM has any abnormalities that could be described this way? They don't believe it will be an issue for me. We are focused on getting my EF back to 50%. I doctor with a CHF cardiologist in the capital city of Nebraska.

  • #2
    Hi Miss AJH

    Unfortunately these message boards will be archived soon, so your best bet to get some guidance would be to contact the office for a planning session, and join the private facebook group https://www.facebook.com/groups/830709766982009/.

    The MYBPC3 gene is in america and caucasians, so not sure where your cardiologist is getting their info from. It is best to see a cardiologist who specializes in HCM for proper management of your disease. The closest HCMA center of Excellence to you may be in Kansas. Our locations can be found at 4hcm.org/coe

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