If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

MYBPC3 Gene

Collapse

About the Author

Collapse
Miss AJH Find out more about Miss AJH
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    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.
    Tags: None
  • #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

    Comment

    Previous template Next
    Working...
    X