#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics

Tue, Apr 11, 2017
10:00am to 10:30am CT

Description

Steven Lester, M.D., cardiologist, at Mayo Clinic in Arizona talks about hypertrophic cardiomyopathy (HCM) and genetics.

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Dr. Lester answered questions during the live event. Questions for Dr. Lester are now closed, but we encourage you to continue the conversations.

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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

Liked by debcrawford

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Liked by debcrawford

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

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 

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

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.

@pegan

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

Jump to this post

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?

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

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 

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

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?

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

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..

Is there any benefit to a patient diagnosed with HCM to have genetic testing, or is the benefit exclusively for the patient’s children, grandchildren?

@colleenyoung

Hi @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @margie11 @fishinglady @uptodate68 @Komalin @quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @ninimurphy @janicepike @onewholovesrock @mbcube @1949 @vialox @margie11 @traceysmith @eelnaloblob18 @vivian88 @pbo2016 @sandys5546

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?

Jump to this post

My son-in-law is having heart issues where he passes out. He has Afib and Atrial tachycardia. His father has hypertrophied cardiomyopathy. Do you think this could be related? The doctor has inserted a monitor in his chest and is waiting for recordings before treatment. I am just concerned.

Good day Dr Lester, I’m fully aware that my question probably has nothing to do with genetic HCM. I’m a cancer survivor of Hodskins over 40 yrs remission but now at 50 yrs of age I have severe calcification on my arteries and heart. I had open heart surgery on 03/16 to replace a aortic valve TVAR, a single bypass, stents placed in my two other arteries to my heart and a pacemaker of which I’m 100 % depended on. All at the same time. My problem is restenosis of my stents. I’m on my 3 rd procedure in one year and am trying to be proactive in the event they get clogged up again. I wanted to know if there was any non invasive procedures I could consider. Yes we have tried drug eluding stents, different meds, ( Plavix now I’m on EFFIENT ). I am a type 2 diabetic. I’m just trying to survive, and I feel as if I’m running out of options. Please point me in the right direction where I might get some answers . Thank you and God Bless. My family and 4 sons will deeply appreciate any source of information. Gus .

Good morning Dr. Lester. If you tested negative for known hcm gene, will we have to retest as new genes are found? Dr Lester I am planing to walk a half marathon in may. Currently walking four to seven miles a day. Other than hydration, what do you want me to be concerned about?

What do you think of the new heart medicine “Entresto””?

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