Bicuspid Aortic Valve - Genetic Study

[dtread]

BAVgenetics is a partnership between Investigators at Brigham and Women’s Hospital, Massachusetts General Hospital and the Harvard-Partners Center for Genetics and Genomics, dedicated to discovering the genetic causes of bicuspid aortic valve disease and associated aortic disease.

http://www.bav-genetics.org/index.html

The Goals of the study are here: http://www.bav-genetics.org/goals.html

I would urge those with Bicuspid Aortic Valve to consider participating in the study. There's a questionnaire to fill out, consent for medical records to be provided, and then they send you a plastic vial for a saliva sample that you mail back to them. Its that easy. The registration information is found here: http://www.bav-genetics.org/registry.html

Your participation might help in identifying the gene that causes BAV and thus help someone else, and perhaps your own family. The FAQs on the site will probably address any other questions you might have: http://www.bav-genetics.org/faqs.html

Note: I have enrolled in the study but am not associated with BAVgenetics and am not receiving any compensation or any other renumeration for this post.

 

[Heart Of The Sunrise]

Interesting study....what can you tell me about life with your ON-X Aortic Valve? I get my four weeks from today.

 

[dtread]

Heart of the Sunrise, your question has been asked many times on VR dot org, and its off topic for this thread, but I'll try to give you a quick summary. I wanted a valve that would approximate a native valve without having to worry about reoperations. The On-X has so far satisfied that requirement. I am fairly active and was worried about being unable to perform athletically. Not a problem! I've had the On-X over 170 beats per minute (for brief periods) in rigorous exercise without any problems. The Coumadin pleasantly has had few side effects for me and once I got a home tester monitoring it became a piece of cake. I'm glad I went with a mechanical as I sure would not want to go through another open heart surgery. That just about killed me. I was in the hospital nine days, had to get a blood transfusion, had heart block, and ended up in the ICU and then had to get a pacemaker (which I still have, as sort of a bonus). It took a long time to recover from the debilitating surgery. I was back to around 70% within 3 - 4 months. To get the remaining 30% of conditioning (i.e., to get back to near 100% of pre-op conditioning) took a FULL YEAR. Good luck with your surgery!

Now, if you have BAV, please register for the BAVgenetics study so that the gene that causes BAV can hopefully be identified. Knowledge is power!

 

[JeffM]

Hey Dan, Thanks for the info on the study. Since my mom had her BAV replaced at almost the same age as I, this topic is of particular interest to me.