Susan Shapiro's HCM Journey

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Susan Shapiro's HCM Journey I'm sharing my journey with HCM to spread awareness and information about hypertrophic cardiomyopathy. Visit www.4hcm.org for more information about HCM.

This is a vetted GoFundMe for an HCM Hart warrior who needs a heart transplant. Please help if you can.https://gofund.me...
04/10/2025

This is a vetted GoFundMe for an HCM Hart warrior who needs a heart transplant. Please help if you can.
https://gofund.me/5e7aee help this 373

It's been over 475 days and it's almost time for Kate to get her new heart as she … Brooke Amadon needs your support for Help Kate's Heart Transplant Journey!

Support the HCMA's campaign to reverse the cuts to Medicaid!  Simple action:
06/08/2025

Support the HCMA's campaign to reverse the cuts to Medicaid!
Simple action:

Sixty years ago, Medicaid and Medicare were created when President Lyndon B. Johnson signed the Social Security Amendments into law. These programs were central to Johnson’s “War on Poverty,” designed to combat health and economic inequality.

I shared my HCM journey on the Tales from the Heart Podcast.  Thanks for listening!  HCM has caused a lot of heartache i...
30/11/2024

I shared my HCM journey on the Tales from the Heart Podcast. Thanks for listening! HCM has caused a lot of heartache in my family, but there is so much hope for the future with advances in treatment.

Welcome to Tales from the Heart's patient journey segment: Share Your Story. Host Lisa Salberg introduces us to Susan Shapiro. She is an HCM patient and HCMA Ambassador. This conversation was recorded Nov. 1, 2024.

It's amazing that this baby, who died 17,000 years ago, has the same genetic mutation for HCM that I do (MYBPC3).
20/10/2024

It's amazing that this baby, who died 17,000 years ago, has the same genetic mutation for HCM that I do (MYBPC3).

The well-preserved remains of a baby boy who died 17,000 years ago in what is now Italy reveal that he had blue eyes, dark skin and curly hair.

I was so proud of myself for doing this hike today, especially since there’s an elevation gain of about 300 feet to get ...
19/07/2024

I was so proud of myself for doing this hike today, especially since there’s an elevation gain of about 300 feet to get out of the canyon. But then I took a two hour nap and I felt like less of a hero. 😄

24/03/2024

There is a post going around that gives advice on what to do if you think you are having a heart attack. The example given is that you are driving and presumes that you are going to try to make it to the hospital. People are sharing the post without doing a simple Snopes check. So I’m going to say it loud:
DO NOT COPY AND PASTE THIS POST! JUST DON’T!
If you think you are having a heart attack, especially if you are driving, PULL OVER AND CALL 911.
Could the coughing technique help once you are waiting for the ambulance? Maybe.
A tip off that the original post was written by someone who doesn’t know what they are talking about is that they mention both HEART ATTACK and CARDIAC ARREST.
A HEART ATTACK happens when blood flow to the heart is severely reduced or blocked. The blockage is usually due to a buildup of fat, cholesterol and other substances in coronary arteries. A heart attack can happen suddenly, but many people DO have warning symptoms hours or even days in advance.
CARDIAC ARREST happens suddenly due to a change in the heart's electrical activity. The change makes the heart stop pumping blood to the body. The victim will lose consciousness, collapse, will have no pulse, and will stop breathing. CPR must be started very quickly in order to save the victim’s life. 

So if you see this post DO NOT SHARE IT! It goes like this:
❤️ When you are alone and have a heart attack. What are you gonna do then?
A rarely good post that can't be shared often enough:
1. Take a 2 minute break and read this:
Let's say it's 5:25 pm and you're driving home after an unusually hard day's work.
2. You are really tired and frustrated.
All of a sudden your chest pains. They are starting to radiate in the arm and jaw. It feels like being stabbed in the chest and heart. You're only a few miles away from the nearest hospital or home.
3. Unfortunately you don't know if you can make it..
4. Maybe you've taken CPR training, but the person running the course hasn't told you how to help yourself.
5. How do you survive a heart attack when you're alone when it happens? A person who is feeling weak and whose heart is beating hard has only about 10 seconds before losing consciousness.
6. But you can help yourself by coughing repeatedly and very strongly! Deep breaths before every cough. Coughing should be repeated every second until you arrive at the hospital or until your heart starts to beat normally.
7. Deep breathing gives oxygen to your lungs and coughing movements boost the heart and blood circulation. Heart pressure also helps to restore a normal heartbeat. Here's how cardiac arrest victims can make it to the hospital for the right treatment
8. Cardiologists say if someone gets this message and passes it on to 10 people, we can expect to save at least one life.
9. FOR WOMEN: You should know that women have additional and different symptoms. Rarely have crushing chest pain or pain in the arms. Often have indigestion and tightness across the back at the bra line plus sudden fatigue.
Help save lives by spreading this message.
❤️ COPY (hold your finger, click on the text and select copy, go to your own page and where you normally want to write, select finger again and paste)
❤️IT❤️SAVES❤️A LIFE❤️
I repeat, DO NOT COPY AND PASTE… This advice could kill someone !

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