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...
by Erinsads | May 21, 2022 | Blog
Can you tell me a little bit about your ARVC journey – from diagnosis to where you are today? I had my first symptoms years before my event. I did a VO2 test once, while I was doing triathlons, and a strange heart rate result came back – but because I was young and...
by Erinsads | May 10, 2022 | Blog
In June 2023, the SADS Foundation brought the ARVC patient community together for a first ever FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gave the FDA and other key stakeholders — including researchers, biopharma companies,...
by Erinsads | May 6, 2022 | Blog
When Joelle was 12, she passed out in church – and testing revealed that the culprit was ARVC. And it progressed quickly – a year after diagnosis, at 13, Joelle got an ICD to help regulate the “electrical chaos” in her heart. Joelle had been a competitive figure...
