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mommiesboy1 (@mommiesboy1)

My 11 year old was diagnosed with HCM

Hypertrophic Cardiomyopathy (HCM) | Last Active: May 16 7:37pm | Replies (17)

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@knecht

@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point guard on her varsity team and starting setter on volleyball team. She had a septal myectomy two and a half years ago at Mayo in Rochester, MN. Any questions please ask, I know the scared mom feeling you are not alone.

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Replies to "@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point..."

@knecht and @mommiesboy1 I was diagnosed with HCM as an early teen, probably about 14. I missed some sports, but played football in college, backpacked and ran until about age 55. Now I am learning that what I really have, apparently, is Amyloidosis AL, probably Gelsolin or similar. I went through syncope, tachycardia, pain, broken teeth, purpura, sFLC, now have protein deposit in my cerebrum cortex, and seem to getting into dementia. Et Cetera…. I am now 78, and I need treatment now, but it is difficult to obtain. Doctors seem to forget that it is progressive, and what did not show two years ago may be killing now.. https://bit.Ly/1w7j4j8

My grandson was just diagnosed with Hypertrophic Cardiomyopathy, he is 15. Myself, his parents and family are terrified of this diagnosis. He was diagnosed with heart murmur at age 6 and the follow up echocardiogram didn’t show any issues. At age 13, they found that the left side of his heart was enlarged slightly, they did a wait and see approach. They thought it might be puberty etc. and hoped that he would outgrow this ( not sure if I’m saying that right). He is being sent to a Cardiologist at Vanderbilt Hospital for a cardiac MRI. That is all we know at this time.

At 15 the echocardiogram showed no improvement, and that his heart is two times the normal size, if I understood that correctly.

I was wondering about your daughters experience and symptoms before surgery and her success after surgery.

My son is so worried that this diagnosis is a death sentence. My grandsons only symptom is he out of breath when he plays strenuous sports.

Any information will be much appreciated!