Susan Shapiro's HCM Journey

08/07/2026

I used to love my birthday, and it was always more fun to share it with my twin. Our joke was that we could lie about our age, because we agreed on the age in advance and were each other's back up.
I don't love my birthday anymore. This year is a "milestone" birthday year, and is the second birthday without my twin.
He had carotoid artery disease, plus a turbulent HCM heart and died of a massive stroke.
HCM alone is tricky to treat, but any complications can turn you into a fragile patient. Guard your health in any way that is under your control - healthy weight, don't smoke, exercise - whatever you can do.
I love this picture from 2014 when we shared a birthday cake at my wedding.

10/04/2025

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!

08/06/2025

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.

11/30/2024

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.

10/20/2024

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.

07/19/2024

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. 😄