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Searching for specific HCM experience. Have you or a loved one been diagnosed and encouraged by your cardiologist (HCM expert or otherwise) to participate in athletics or organized sports and gone on to have a cardiac arrest (survived or not)? If yes, please contact the HCMA at 973-983-7429 or email support@4hcm.org
As a point of clarification, for the purposes of this question - the person who had the cardiac arrest needs to have been given a clear diagnosis of HCM and the expressed approval from a physician to continue or resume athletic activity.
Thank you for sharing - together we can all learn more about HCM and save and improve countless lives!
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2 weeks ago  ·  

Well just got a phone call from the kids cardiologist and now my 9yr son has to get an ICD.....seriously how am I supposed to stay calm and stress free for my own health when I have to worry about my kids😣 ... See MoreSee Less

2 weeks ago  ·  

A special message from HCMA Founder:
youtu.be/I1316z0ptB4
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3 weeks ago  ·  

I was just wondering if anyone had any insight. .... I forgot to ask my Dr today at my appointment. Well here goes. I am a union ironworker and my Dr informed me that I am at higher risk because of my strenuous job....so my question is how does extreme heat in combination with strenuous activities effect hcm? ... See MoreSee Less

3 weeks ago  ·  

From Lisa Salberg Founder of the HCMA on this the 20th Anniversary of the death of her sister.

At 5:55am June 12, 1995 the phone rang, Mom said you were not breathing and that Dad was on the way to the house and Larry Flanigan was getting the ambulance. Stacey Titus and John Titus were home with you and John even helped get you out of bed so that CPR could be started. I darted out of bed with my very pregnant belly and Adam Salberg helped me button my shirt because my hands were shaking so badly. We raced down Rt. 23 not knowing if you were dead or alive - the world before cell phones left us no choice but to wait until we arrived at the ER to know what was going on. I talked to Becca Salberg still in my belly.. and begged her to sit tight and be good to mommy while I took care of you - she did she stayed put for nearly a month more.

Lynn Flanigan Perry and Kevin went to your house to be with John and Stacey. I am not really sure when Laura Munsonand Stephanie got the news that life was going to change again. The fact your heart was beating at all when I arrived at the ER was amazing - the CPR worked - there were no AED's on the rig in 1995. We transported you to Morristown Medical Center where we waited days to find out your fate... You were our sleeping beauty. I took the ring off your finger and told you I would wear it until you could again. I teased you to wake up or I would color your hair. You didn't wake... you drifted far away... and then you left a few days later.

Each year as these days roll around again I am struck with the whole left in my heart from the day you left us. It has been 20 years today and I can still recall every moment, the fear, the shock, the anger, the disbelief. Who would you be today? Who would I be today if not for the events of this day 20 years ago? I do not know the answer to that - I cant know. All I do KNOW is that I loved you then, I love you today and I will love you tomorrow. I know because you left so early, after only 36 years, so many other have been helped.. you created a bit of a monster Lori.... Knowing the pain caused by your death - I have committed my life to ensure others are spared from it... I don't always win that battle... but HCM is way different today then it was 20 years ago.. and YOU are why.
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3 weeks ago  ·  

I hear there is a hcm hocm specialist in Stanford. I will be in that are in a couple of weeks. Can anyone help me with some 411. My.cardiologist doesn't know and he stresses that I need exercise and loose weight but I can hardly walk let alone walk. Ugh. Thanks ... See MoreSee Less

3 weeks ago  ·  

I have been diagnosed with Familia hypertrophic cardiomyopathy by a cardiologist at UF hospital in Jacksonville Florida. I had a follow up appointment with my pcp who referred me to a cardiologist at St. Vincents Jacksonville who told me I do not have HCM . He diagnosed me with coronary heart disease. And told me to make an appointment in 6 months!!! I tried to make a follow up visit with UF and was told I would have to change my pcp to obtain a Shands Card and be seen by the cardiologist there. I'm so confused and scared. I have medicaid ....Mayo Jacksonville won't accept my insurance and wants me to put 5K in escrow to even be seen. Where do I go? What do I do? Are there ANY cardiologists that specialize in HCM that accepts medicaid or am I doomed for not having the financial ability to be seen by a cardiologist that has experience with FHCM ??? ... See MoreSee Less

3 weeks ago  ·  

Hi there, I just made a Facebook, and wanted to say thank you for having a page that brings awareness, and support to such a tiresome, and hard disease to have!
I was diagnosed 2 years ago, and it's hard to explain to people how a young, vibrant, outgoing person can still be sick - people just don't get it!
I don't know anyone else with HCM, I would love to connect with any others who may have it.

Thank you again for this page, it's a great relief! God has blessed me with a second chance at this life, and disease or not - I will make a difference in this world. ❤️
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3 weeks ago  ·  

Honored to be honored today. ... See MoreSee Less

3 weeks ago  ·  

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