What is amyloidosis?

https://connect.mayoclinic.org/comment/173897/
Hello @newtosohcm, I found this link you may find interesting. Have you done a search here on Connect for amyloidosis of the heart? If not, I encourage you to take a look around the site as there is more information starting to show up on this condition. It seems pretty elusive to diagnose, just like HOCM/HCM. Is this something you are interested in because you may have it versus HOCM?

Hi @newtosohcm, here is a link to amyloidosis - https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178. If you have a chance to look through that, you may learn that "amyloidosis is is a rare disease that occurs when a protein called amyloid builds up in organs. This amyloid buildup can make the organs not work properly. Organs that may be affected include the heart, kidneys, liver, spleen, nervous system and digestive tract."

Amyloidosis can effect many different organs, including the heart. @newtosohcm, if you are comfortable sharing, were you diagnosed with amyloidosis? If so, what areas are effected?

No and I asked my cardiologist when I met with her yesterday if my HCM dx could be in any way confused with amyloidosis since my PCP was curious about this. The cardiologist said that my labs checked for Amyloidosis by checking my “Kappa light chain, serum, free” and that Amyloidosis was ruled out. I need to read more about all of this. Apparently what I’m dealing with is the symptomatic obstructive HCM and the Camzyos seems to be helping. Funding for Camzyos ongoing is a big challenge as is the frequent and costly travel far from my home to get good care. I’m grateful though for the UCSF team!