Medical Disclaimer: All DCM patients are different. Information presented on the DCM Foundation website is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Please consult your physician, cardiologist, or other qualified health providers with any questions you may have regarding a medical condition and/or before doing any activity.
Patient Stories & Videos
Living with Cardiomyopathy: Lily’s Story of Strength and Resilience
Lily was born with a strong heart unlike her two siblings, who required open heart surgery as infants. Lily was initially diagnosed with a simple heart murmur but the restrictive cardiomyopathy gene is in her family. For Lily, regular cardiology check-ups was a part of growing up. Her heart didn’t limit activity her until she
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Stephanie Fallon’s Story – Living Well with DCM Since Age 15
We’re honored to share the story of Stephanie Fallon, a patient advocate and friend of the Foundation. Her story reflects the advancement of DCM awareness and treatment since her diagnosis. Her life is a testament to our ability to adapt, persevere, and live life to the fullest each and every day. Stephanie was born with
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2023 DCM Patient & Family Conference
Please click on this link or the image above to view a recording of this webinar and learn about: DCM Basics Overview The Future of DCM Therapies Support for Your DCM Journey Living with DCM – Panel Discussion with 3 Patients Live Q&A
Jim’s DCM Story – “The Hardcore Battle.”
“My story is the hardcore battle.” Jim Hogan has been fighting that battle since he was diagnosed with non-ischemic DCM in December 2021. The six months after his diagnosis were hard because he thought he only had a year to live. He got his affairs in order and started to disappear: he lost weight, sold
Call for Genetic Cardiomyopathy Patient Videos
Interested in sharing your story of genetic cardiomyopathy to help others? The DCM Foundation and the Genetic Cardiomyopathy Awareness Consortium (“GCAC”) are looking for short patient videos or written stories about genetic cardiomyopathy to share in our awareness campaign. Please submit a short video or written piece that tells your genetic cardiomyopathy story using the
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Sarah Schaff is Still Hiking Mountains
Written by Shawn Lake In the Spring of 2018, Sarah Schaff was in Denver to take the first steps toward donating part of her liver to her stepbrother, who had a rare liver condition. She would have a few tests and then head for the Henry Mountains in Utah for a hiking trip. It almost
Baby Alaynah’s DCM Story: Beating the Odds
Baby Alaynah was diagnosed with DCM and beat the odds, receiving a special heart transplant just before her first birthday. “After being diagnosed with severe dilated cardiomyopathy, a 5-month-old infant from Brunswick County was facing an uncertain future. However, she was able to beat the odds after becoming UNC Children’s very first Berlin Heart EXCOR™
One Woman’s 14+ Year Journey with DCM
Meet Sheila McCarr. She wanted to share her story to advance the DCM Foundation’s mission. Here is her story in her own words: “At the age of 52, I was told that it was highly likely I would need a heart transplant. I had been living with heart disease for many years but this news
Patient Perspectives: Go Hard or Go to CR
By Denise Williams | News & Views Greg Ruf will be the first to tell you: he used to be a bit of a fitness fanatic. Okay, “a bit” might be soft-selling it: the 57-year-old was totally an adrenaline junkie. You name it, he did it—running, swimming, cycling, elliptical, strength training. A ball of energy who had
Shane’s Life Saving Heart Transplant
“Shane Smith (28) has shared his story as a reminder of how life-changing organ donation can be. At the age of 14, Shane was diagnosed with a mild heart condition and within a year, his life depended on a heart transplant…” To read about Shane’s experience with DCM and heart transplant – please click here.