Thank you so much for sharing. My cardiologist specializes in HCM at Emory University. She said I am a possible candidate for a clinical trial study for Aficamtem, but those trials take awhile to get going and I have to meet certain requirements. She said the Camzyos is under trial now for use with patients with non obstructive HCM, but it will likely be 1-2 years before the FDA approves that medicine for use with non obstructive HCM.
She is my 2nd cardiologist and both of them agree that I likely have fluid in my lungs which is causing the symptoms, but the Lasix doesn’t help.
I appreciate your response. It can be a very isolating experience to have this disease so I am glad to have found a support group.