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Ben Breedlove and Our Education on Hypertrophic Cardiomyopathy

Guest Blogger: Bob Pearson

Ben Breedlove was an amazing young man who passed away on Christmas Day at the age of 18 due to hypertrophic cardiomyopathy and, ultimately, cardiac arrest.

I had the opportunity to get to know Ben via our 15-year-old daughter, Brittany, since they shared a passion for wake boarding and wake surfing on Lake Austin in our hometown of Austin, Texas. Before I knew that Ben had a heart condition, all I knew was that he was well mannered, mature, fun loving and a real pleasure to have on our boat. I remember saying to Brittany that Ben is the kind of boy that parents’ hope will marry their daughter.

It turns out that Ben had hypertrophic cardiomyopathy, a form of heart disease in which the lower left chamber of the heart (the left ventricle) becomes abnormally thickened and enlarged.

One week before Ben died, he created and uploaded two videos to YouTube (part one and part two) describing how he felt about his condition. Few saw these videos until Christmas. Since then, many people are aware of what happened to Ben Breedlove.

With great awareness we always hope that great learning can also occur too, which is why I thought sharing a post today could have value beyond Ben’s story and help others who want to learn about this condition. Learn more about hypertrophic cardiomyopathy on Sharecare.

Let us know what else we should be sharing on this condition to help others learn more.

Our thoughts are with the Breedlove family today and with all who live with hypertrophic cardiomyopathy.

All the best,

Bob

File under: In the News

Contributor

Bob Pearson

With nearly 25 years of social media, marketing and communications experience, Bob is now Chief Technology and Media Officer for WCG, a leading independent global communications company and “2011 Global Healthcare Agency of the Year”. He was most recently vice president of Communities and Conversations at Dell Inc., and previously served as Head of Global Pharma Communications for Novartis, and Vice President of Global Public Affairs & Media Relations at Rhone-Poulenc Rorer (now Sanofi Aventis). Bob has served on a variety of boards, including CancerCare, The Huntington’s Disease Society of America and the Dell Foundation. He is author of the book Pre-Commerce: How Companies and Customers are Transforming Business Together, and is a frequent speaker and blogger on social media.

View my Sharecare profile

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Comments

  1. Bev walton

    I too have HCM. I am 63 years old. I discovered I had it when I was too short of breath to do everyday activities I was always able to do. There is a genetic test for this and Bens family can and should be tested for this as soon as possible. There are medical and surgical therapies for this condition but you need to know you have it. It is the leading cause of sudden cardiac death in teens. When they die on the athletic field this is usually the cause. There is a movement to have all high school athletes tested for cardiac disease. Please support this effort to save our children. Look on line for more info. St Luke’s/Roosevelt hospital in NYC is a leader in this condition.

    December 29th, 2011, 6:15 pm
  2. Janet Hicks

    My husband had this condition and after years of seeing his heart doctor he finally met a specialist that informed him he knew a hospital and a doctor that could help him. My husband was sent to Tufts New England Hospital in Boston, Mass. After many test he was told he was an excellent candidate for surgery. He had the hospital, which shaved the thickened heart muscle. He was in the hospital for 6 days and on the 7th day he returned home. That was almost 4 years ago and he feels great, he is self employed and still works at age 65. I truely believe that if he had not found out about this doctor and Tufts Hospital he would not be here today. If anyone else has this problem please contact Tufts New England University Hospital in Boston, Mass. and hopefully they can help you the way they helped my husband. My thoughts and prayers go out to the family of Ben.

    December 29th, 2011, 6:15 pm
  3. Lynn Klein

    Ben did more to bring awareness to hypertrophic cardiomyopathy with his two videos than any patient or professional organization has been able to accomplish. His cue cards and bright smile will forever be associated with HCM and the face he put to the disease. He told the world how he lived his life with the disease – instead of just dying from the disease. That is Ben’s legacy.

    Bob has now taken Ben’s story to the next level – by challenging all of us to continue Ben’s Legacy – the education about hypertrophic cardiomyopathy to those who want and/or need to learn more. This isn’t just Ben’s disease……

    Thanks, Ben. I will never forget your smile and bright eyes. And thanks Bob. As always, you are right on target!

    December 30th, 2011, 12:24 am
  4. susan

    I was diagnosed with HCM in 1979 when I was 27. Back then they called it IHSS. I was so sad to read about Ben and wonder why I have lived so long with this condition but someone so young and with his whole life ahead of him could not. I know that life is not fair. I hope more education and treatment will make people more aware of HCM and that we won’t lose any more young ones. I exercise 5 to 6 times a week and my heart is a lot stronger today than it was even 5 years ago. I wonder every day if my heart is going to suddenly stop like Ben’s. I am tired of getting so winded when I walk up stairs or hills but I thank God that I am able to be alive to do it. I wish Ben was.

    January 2nd, 2012, 2:21 pm

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