1. < Hypertrophic Cardiomyopathy (HCM)
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Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

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peggykmitchell | @peggykmitchell | 1 day ago
In reply to @colleenyoung "@jess51 @memphis901 @peggykmitchell, gene mutations and family genetics can sometimes be used interchangeably, but they are..." + (show)
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@jess51 @memphis901 @peggykmitchell, gene mutations and family genetics can sometimes be used interchangeably, but they are distinct.

Hypertrophic cardiomyopathy (HCM) usually is caused by changes in genes that cause the heart muscle to thicken. It is often inherited, called familial HCM. People with one parent with hypertrophic cardiomyopathy have a 50% chance of having the gene change that causes the disease. Not all genetic mutations causing HCM are familial. However, genetic testing or genetic counseling may be recommended if you have a family history of the condition.

Further reading from
- Mayo Clinic https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
- Is Hypertrophic Cardiomyopathy Always a Familial and Inherited Disease? https://www.ahajournals.org/doi/10.1161/JAHA.122.028974

In this Q&A with Mayo Clinic's expert, Steven J. Lester, M.D., talks about hypertrophic cardiomyopathy (HCM) and genes.

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Thank you for the information. I have done some genealogy in the past and
recall both of my mother's maternal grandparents dying fairly young. I then
realized that one of their sons had three sons, all of whom died young,
with two of them definitely having heart issues, although I am not sure
what happened with the oldest son. Then, I found other cousins descended
from those grandparents who had died in their 40s, although one died of
cancer. So, I am thinking there may be a familial gene mutation, but I need
more information to determine that. I like to KNOW about things and so I
like to solve family "mysteries". Thanks, again.

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rebaheizer | @rebaheizer | 1 day ago
In reply to @peggykmitchell "@memphis901 Hi, I am a 75 year old female who lives in Mississippi, not too far..." + (show)
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@memphis901
Hi, I am a 75 year old female who lives in Mississippi, not too far from Memphis. Why do you say that HCM is not genetic when every source I can find says that it is. I am zeroing in on my mother's maternal grandparents as being the side of my family that passed the gene on. They both died fairly young in age. One of their sons had 3 sons who each died at a relatively young age of some kind of heart problem, and their father had heart issues, as well. Most of my other ancestors all lived very long and productive lives. I am also curious as to why you think HCM is not treated in Memphis? My own cardiologist is with the Stern Clinic in Oxford, and they are working to get me approved for Camzyos.

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@peggykmitchell you may or may not carry the gene related to HCM. I have a gene mutation but not the pathogenic gene associated with Hcm but still have Hcm. The gene test determines who else maybe needs screening like parents, siblings or children.
One tool in the box.

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jimhealthy | @jimhealthy | 1 day ago
In reply to @peggykmitchell "@memphis901 Hi, I am a 75 year old female who lives in Mississippi, not too far..." + (show)
Profile picture for peggykmitchell @peggykmitchell

@memphis901
Hi, I am a 75 year old female who lives in Mississippi, not too far from Memphis. Why do you say that HCM is not genetic when every source I can find says that it is. I am zeroing in on my mother's maternal grandparents as being the side of my family that passed the gene on. They both died fairly young in age. One of their sons had 3 sons who each died at a relatively young age of some kind of heart problem, and their father had heart issues, as well. Most of my other ancestors all lived very long and productive lives. I am also curious as to why you think HCM is not treated in Memphis? My own cardiologist is with the Stern Clinic in Oxford, and they are working to get me approved for Camzyos.

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@peggykmitchell — I have HCM but I don’t have any of the genes. I have been gene-tested three separate times.

On the other hand, my two grandsons have been tested and found to have the genes. Both are non-symptomatic so far.

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rebaheizer | @rebaheizer | 17 hours ago
In reply to @jimhealthy "@peggykmitchell — I have HCM but I don’t have any of the genes. I have been..." + (show)
Profile picture for jimhealthy @jimhealthy

@peggykmitchell — I have HCM but I don’t have any of the genes. I have been gene-tested three separate times.

On the other hand, my two grandsons have been tested and found to have the genes. Both are non-symptomatic so far.

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@jimhealthy maybe your spouse carries the gene.

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jimhealthy | @jimhealthy | 9 hours ago
In reply to @rebaheizer "@jimhealthy maybe your spouse carries the gene." + (show)
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@jimhealthy maybe your spouse carries the gene.

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@rebaheizer — or my mistress.

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