#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics

My family and I did the gene testing at Columbia NYC. out of 7 of us 4 are HCM positive 3 do not carry the gene, Out of the 4 with HCM 2 (incliding myself) have heart transplants and are doing wonderful. My question is. If you show negative in the gene test, does that mean the HCM gene stops there with that person and can not be carried down to there children ? We have 13 neices and nefews and sadly to say lost one at the age of 24 due to HCM (we carry sudden death) Those who are positive had our children tested my son as well who now has a defibulator even thouh he shows no signs. We were told the children who are positive should do invetro to stop the gene And those who are negative do not need to worry for the gene can not jump a generation.For those who are wondering if gen testing should be done for your family I highly recomend it. Knowlege is everything and prevention is the best way to go. Thank you for your time

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Friday, April 14, 12:30 p.m. CT (10:30 a.m. PT/ 1:30 p.m. ET) Connect is hosting a live Q&A with Steven Lester, M.D., cardiologist, at Mayo Clinic in Arizona. Topic: Hypertrophic Cardiomyopathy & Genetics

What question would you like to ask Dr. Lester related to HCM and genetics?

I had a genetics test done which checked 25 specific genes.  It was negative.  Does that mean my HOCM is not due to genetics?   Sandy 

No. It means that your gene is one of those that has not yet been identified. They think so far that they have identified only a little more than half or so of the genes that cause HCM. The rest have yet to be discovered.

Welcome to Connect, @pegan.
Great question for Dr. Lester: "If you show negative in the gene test, does that mean the HCM gene stops there with that person and can not be carried down to there children?" We have passed it on.

I'm glad to hear that you are doing well. At what age did you have your children tested? How do you talk about the results with your children?

I have three grown children and have not been able to get them to have an echocardiogram to see if they might possibly have this disease.  Come from a large family with a history of heart disease and none of them were diagnosed with it.  Have a niece who has dilated cardiomyopathy.  Was hoping that my family would not have it since I had the negative gene test.  Is this always a genetic disease? Sandy 

If your genetic tests show you have two HCM genes, is that indicative of a more severe form of the disease or more complications later in life?

How soon should we be having my 5 year old grandson tested for this? My Genetic testing came back negative for now, but I know it has to be genetic because my father and I have it both.Thanks!

What are the percentages of sucessful genetic testing?
I don't see many on this thread.

Does insurance cover the cost for testing?
And would you suggest testing your children, even though my test was negative..