@margieinsb Twenty years ago, they found it via an echocardiogram. It was urgent then as I couldn't walk 10 feet. I was weak. I had afib.
A new cardiologist read the echo, apologized for the practice missing it for years, and urged me to fly to Mayo quickly. Had a septal myectomy at Mayo. Reversed everything. Got my life back. Since then many med adjustments and on losartan and bystolic now to regulate blood pressure. No gene identified for me either. I think they're learning more every year about the genetics. Doesn't matter. I have hcm. Every 2 years, get very definitive cardiac MRI. Every year an echo. The word incurable really initially scared me. Looking back, I had no idea life would be so good at 80. I do less vigorous exercise now too. But I keep moving. Not often discussed here, found a relaxing hobby too. For me, it's art. Self taught acrylic painter. Stay socially connected. Volunteer too. You would not know I was dealing with hcm today. I do a lot of volunteer work with 4hcm.org to increase hcm awareness, so one day physicals, especially for kids, will include more cardiac related tests. 4hcm.org will tell you of sudden cardiac death of kids whose family, like us, did not know about hcm. My life is really good. More wrinkles, but good! Lol I never knew my initial fears would result in decades of this quality of life. Not sure I'd still be here today if 20 years ago, we didn't figure out the murmur was hcm. So very blessed. The other thing not often discussed in support groups is I had my son checked and notified my large Italian family of this genetic disease, so they could decide to get checked. Many probably did not get checked because of fear, but I felt that obligation to inform family. Personally I'm very glad I know!