by Erinsads | Oct 3, 2022 | Blog
Tom and his daughter Meg Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? I’m the first one in my family to have this condition that we know of. I call myself the “mutant” – the one that first had the gene. As a kid,...
by Erinsads | Sep 23, 2022 | Blog
This September, Hailey competed in the national and world amateur divisions for aerial silks. “Doing aerial silks always makes me feel free, like I’m flying,” says Hailey. Aerial silks is a combination of contemporary dance and acrobatics, performed while suspended in...
by Erinsads | Sep 19, 2022 | Blog
Jimmy, Jackie’s son Crissy, Jackie’s daughter Can you tell me a little bit about your SADS journey – from diagnosis to where your family is today? It was so common for our family to fall over having seizures, and back in the 1960s, they weren’t thinking...
by Erinsads | Sep 6, 2022 | Blog
Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today? Jeff & his son at a baseball game I was diagnosed with ARVC in May of 2021, but I got my ICD in August of 2017. Given that ARVC is a genetic disease, I guess I had it in...
by Erinsads | Sep 6, 2022 | Blog
Lizzie Name: Lizzie How and when were you diagnosed? I was diagnosed with ARVC in the middle of a career of ultramarathon running at the age of 31. I started to develop shortness of breath and weakness in my legs during my training runs, and not long after that I...