Anyone take new drug Camzyos (mavacamten) for HCM?

@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.

@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.

@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.

@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.

@jimhealthy maybe your spouse carries the gene.

@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.

@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.

@rebaheizer The particular gene that causes your HCM probably has not been found as of now. When looking for my mutated gene, 123 of the known HCM-causing genes (in 2022) were tested and all were OK. I was told to contact them in 5 years at which time more will probably have been discovered. We would check my DNA for these new findings.