Your Story
Read andShareStories
Empower yourself
HCM & DCM may be silent diseases, but those who are afflicted by them have a voice.
Here we have collected personal stories from patients and family members of those with inherited cardiomyopathy. Our goal is to create a safe environment to share experiences – good and bad – with others who know what you’re going through. Together, we can learn from and inspire each other.
Please fill out the form below and a member of our team will contact you shortly.
My name is Patricia Lyons.
I am Irish but have been living in the Dominican Republic for over 30 years. I was diagnosed a week ago with Beginning Stage Heart Failure due to Dilated Cardiomyopathy. My cardiologist told me I am in Class I, stage B. I should mention that here in the D.R. people go to see specialists or consultants rather than a local G.P. I have private, medical insurance which allows me to do that.
Bouba's Story of DCM and LVNC
Hi, my name is Bouba. Based on the size of my heart, I should be 12ft tall. But, I am only 6ft7in.
I was born with a congenital heart condition and live at the risk of sudden cardiac arrest for a long while. I survived congestive heart failure and an LVAD open heart surgery. Currently, I am on the waiting for a heart transplant.
Eric's HCM Adventure
Thanks to my big “sister” Sheryl I began playing tennis at the age of 8 or 9. A tennis player herself, she took me to the courts adjacent to Carlsbad High School and I began to bat the ball around with her using my Wilson Jack Kramer Autograph wood racquet graciously provided by my Uncle Mark.
Chloe and Kendall
I am a very blessed man with three beautiful children and a beautiful supportive wife Christine. Max is our 2 year old son and we have twin daughters who are 18 months old, Chloe and Kendall. When we found out we were having another baby after we were surprised. When the ultrasound technician muttered the words Baby A, our jaws dropped. It was one of those feelings that people always joke about but the way our luck has it we were the ones blessed enough to have it actually happen... Twins.
The story of Carson Alan
I was due with my first child in September 2009. During my prenatal appointments my husband and I noticed that the baby’s heart rate was always at the high end of what the doctor considered “normal”, but it was our first baby so we trusted the medical staff that said everything was okay.
Do you have any story to share? We invite you to write to us and we will publish it to inspire others.
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Aaron Murphy
Edelman
Aaron.murphy@edelman.com
1 (415) 229-3331