“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
Patient Stories & Videos
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
Read More… from Call for Genetic Cardiomyopathy Patient Videos
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
Stephanie Fallon’s Story – Living Well with DCM Since Age 15
We’re honored to be able 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 and persevere. Stephanie was born with DCM but wasn’t diagnosed until she
Read More… from Stephanie Fallon’s Story – Living Well with DCM Since Age 15
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.
Diagnosed with DCM at 40 – A Hereditary Link?
Meet Andrea, who was recently diagnosed with genetic DCM at age 40, despite not having any symptoms. Andrea’s family experience with DCM started when her father was diagnosed with a reduced ejection fraction in his late 30s. For decades he lived an energetic life —running three miles a day until his mid- 60s—with asymptomatic DCM. He
Read More… from Diagnosed with DCM at 40 – A Hereditary Link?
Millicent’s Story: DCM & Genetic Testing
Meet Millicent! This is her story in her own words – as initially published on our Facebook page: “On November 5th, 2021, I received news that I had tested positive for a LMNA gene mutation that causes DCM and dangerous arrhythmias. I agreed to testing given my family history of my father’s sudden cardiac arrest