Відео

Thank you!

Dino tells such a powerful history. He reflects the visceral emotional experience most of us with HCM must endure. Thank you for letting him share his experience, which no doubt will inspire many.

I have ME/CFS and just recently I’ve been experiencing shortness of breath type two diabetes chest pains and extremely exhausted also dizziness and headaches and nausea could HCM also be connected with ME/CFS

In February 2024 I was having symptoms and my cardiologist said I have murmur. Referred me to a specialist who deals with Obstructive HCM and I got my genetic testing done, MYH7 was found and diagnosed with HCM. Waiting on approval for camzyos from my health insurer.

A few years ago my Toporal was switched to a generic and I didn't have any knowledge to know that could be bad. I am an HCM patient. Within a few weeks, I started having very high heart rates and my heart felt irritable. I started researching and asked to have my drug switched back and they did. Once I got back on the original manufacturer everything settled down. I will always try to stick to that one!! It's scary!!

Good morning Ladies

Was it real expensive

Are grandchildren at risk?

Dmd with cost

Not a good feeling living with obstructive hypertrophic cardiomyopathy.😔, life changes significantly.Also approval from the insurers is pretty challenging but thanks to the cardiologist who kept trying for approval. I hope the price goes down so camzyos is available to the right candidates with less complications. I am waiting for approval also I wish everyone good health.

Hopefully yesterday... I have non obstructive hcm with chronic afib and HFpEF... can't wait for more treatment options!!!

great information so grateful for you both for the wisdom you share with us! scary about generics but I know Lisa is working on it!!!!

Surprised not to hear New York. I was just diagnosed and Im reeling and in the rabbit hole of research.

Thanks for putting this out. Very timely for me personally, and greatly appreciated. ❤

So true!! SVT's are dreadful too

I've heard So many negatives about ablation. Doesn't really work with ablation 1. Some say 3. Tikosyn is finally what they used and it is working for me. Last cardioversion Jan 12.

Fear of driving and causing an accident.

*Promo sm*

Thank you for this!

Im on it. Tikosyn. Haven't had a terrible episode except once since January. Prior to had 18 episodes requiring cardioversion. From Nov 1 to January 12th 6 cardio's alone. Tikosyn is working for me. Thank God I was staying near Oklahoma Heart Hospital.

I found this so informative. Your guest has a gift for explaining and breaking down complex processes. Thank you.

I am so fortunate to have Dr. Hazday and his wonderful team as my providers and it warms my (HCM) heart to see him in this briefing. I believe everyone who goes to a Center of Excellence anywhere would likely sing the praises of these centers and the high level of care that is provided by a knowledgeable, caring, and compassionate team of professionals. Thank you so much for all you do!

Thank you so much for your comments. I am 59 years old and have been diagnosed with HCM for the past 10 years or so. I have little to no complications with mine however the cardiologist are saying I should. I guess we all live in fear that we could die any minute of the day or night. My friends and family don't understand that but I guess it is something that we all live with. It is as confusing to me as it is the people around me.

Thank-you for posting these experiences. I was recently diagnosed with HCMA. The majority of my education regarding HCMA management has been these videos.

Thank You Fritz for reaching out to those with HCM. I too have HOCM and was not diagnosed until I had a sudden cardiac arrest. I was brought back with an AED. I did not have a heart attack and the ER Dr did not know what was wrong with me. Even my primary Dr said I did not have a heart attack. I was being treated for asthma for 16 years since I was an Arson Investigator. My breathing kept getting worse. Not till I went to the Mayo Clinic was I diagnosed with HOCM. I have had alcohol septal ablation. Now my Aortic, mitral, and tricuspid valves are regurgitating blood. Jim

Hello, thank you so much for the information, but I would like to ask u one question, " can I take the job of a flight attendants as a person with hcm ?" ( I just recently found it just last 2weeks , all the tests are normal ECG, Holter, thread mill except echo ECG where it shows that I have hcm . I don't have any signs or symptoms nor anything ) Can u help me please??

God Bless the cardiologist thinks I have this Go Philliessssss

it's interesting to see what unites those who met the endpoint (gene, scarring, obstruction?)

Thank you Dr. Masri for your efforts in treating our disease, and of course to you too Lisa, for your passionate advocacy.

You are telling my story. All docs either ignored or overlooked the complexities, if s cardiologist.

I used to be able to see the slides. Maybe UA-cam fact checkers have been busy little kids.

Thank you ❤

You nailed 👏🏻👏🏻👏🏻👏🏻👏🏻

Thank you! It was a master class on HCM for me!!👏👏👏

How can I. Communicate

I. Have. Everything you said

I. Allso have it sweetheart and I drink pills from 17 years old

How did Joey do with his myectomy?

Thank you for sharing. 🌹🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

Someone PLEASE explain to me why it is so difficult to get on this medication if my mother is in the correct class. I’m not a doctor, but she is in this group. We’re told that it’s going to take months. Please help.

Please keep doing these important conversations. The more I read and listen, the more I learn about my HOCM.

I'm on the study. So very cool listening to this. I feel wonderful. My life has changed so much. I went hiking in Yellowstone and Grand Tetons for my 64 birthday this year. I never thought I would live to 64, let alone do that!

Yes its the anxiety the tachycardia i hate.. i try not to allow my emtions an thoughts to activate this adrenaline...

Wow. This is me spot on. Mine has lead to afib and mild regurgitation... I hate this. It also makes you depressed. You want to live a full life and do things but your mental an body won't let you....

I was diagnosed 3 years ago at age 49 but my entire life I had symptoms that every doctor that I ever went to , even though I have always had a terrible heart Murmur since birth, always dismissed as anxiety. I would be adamant I have no anxiety! Finally was diagnosed after my symptoms got so bad that I could hardly get out of bed . I’m so happy that this movie is raising awareness so that it is known about and hopefully people will get diagnosed properly unlike me suffering from all the symptoms all those years .

promo sm

I was diagnosed at 61. Always hated sports because I was always out of breath. I am on a trial drug now, and it is wonderful . Life is just beginning.

It was an honor to share my story! Once again thank you Hypertrophic Cardiomyopathy Association! 💖

Thanks to yall so muchh

I will definitely read the other book (China Rx) as I've read "Bottle of Lies".